I am one sick puppy.
And as much as I wish that I meant that in a cool way…frankly, it’s just the opposite. Having celiac disease so does not make me feel cool.
I simply cannot put a good stretch of health together and it’s finally getting the best of me.
Yesterday was a perfect example of my recent struggles.
– Up at 3am because I couldn’t sleep.
– Worked until 8am (yes…I’m fortunate enough to work both for myself and from home…quite the luxury for a celiac.)
– Slept from 8 to 11.
– Slept again from 3:30 to 5.
– In bed at 7:30.
And I would’ve fallen right asleep but I got caught up watching “Point Break” for the 73rd time. It’s one of those bad movies that somehow draws me in every time I come across it. “I AM AN FBI AGENT.” If you haven’t seen it, the movie clip to the right pretty much sums it up for most people.
Quite the productive day, don’t you think??
I feel like I’ve taken a giant leap backwards and I’m just not healing from my celiac disease.
So here’s the deal. Almost six years after my initial diagnosis, I’m finally going back to my GI on Thursday to see what the hell is going on.
I’m going to ask for blood work and another endoscopy.
But this is where I could really use your help. I can’t be the only one in these shoes.
What else should I be asking about? What questions or what other tests should I discuss with my doctor?
Many thanks in advance.
140 thoughts on “Back to the Doctor…Need Your Help”
You are NOT alone. I was dx in 2008 and since last August I seemed to have taken a huge step backwards. Since this April, I feel like I have stepped back into 2006 prior to being diagnosed.
Each day I wake up not knowing what will happen. This past week since Thursday I have been in the bathroom every single day. Not to mention sleeping…
I had my endo a couple weeks ago, and I was told it one, I still have Celiac (really!?! this is a gastro telling me this- I am aware it NEVER goes away) and two I was diagnosed with IBS, which I think is a BS way of saying, “I don’t know what else you have”.
I am waiting for that miracle 180 turnaround some Celiacs speak of after going gluten free.
Hope you feel better soon! As I am in the same Celiac Strugglin’ boat.
Gluten is a son of a wheat eating bulldog!
I am worried that your doctor performed an endoscopy on you to tell you about something happening in your small intestine – I think you should go to another doctor to carry out a gastroscopy
Mine was more of a 360 degree turnaround…
I was also diagnosed with celiac desease..the answer is probiotics its the cure ..trust me I stopped vomiting thank goodness..you lose all the bad symptoms your going through
What brand of probiotics are you taking? I also have celiac, and I never know what I’m going to feel like when I wake up, it’s very discouraging.
Sorry you’re going through this Dude and Chrissy. I wish you both well and hope your doctors can figure out what’s going on. Our bodies are so fickle at times and sometimes we just focus on that, that we neglect our internal self. I internalize everything so it affects my body. Stress and negativity really knock me down and I’ve learned how to cope with it all and it’s helped so much with elevating some of my symptoms. Taking a holistic view of your health is what I would reccomend….the body-mind connection along with the medical side. Take care of yourselves inside and out. Sending you both much positivity and good health vibes!
Lol not elevating oh dear you get what I’m saying. Lol need more sleep!
Gluten Dude…I wish you the best of luck
I was diagnosed four years ago. Felt better almost immediately but the past two years it seems like a take two steps forward then one backwards. On the past two years I have had two colonoscopies, two endoscopies and had the swallow a little transmitter deal and carried a monitoring unit around for a couple of days. Do you think I got any answers? Not a one. I have fatigue, either sleep a lot or I can’t sleep at all. Have bathroom issues like no other. I am cranky because I don’t feel good at all. I have the brainn fog and cannot seem to concentrate and my memory…we do not want to go there!. My sweet husband is so awesome..
The disease is so sneaky.
I sure hope they can give you some insight!
Thanks Kathy. That transmitter thing sounds kinda cool (but I’m sure it must have been a pain.)
I also had the “pill cam” after a small intestinal biopsy showed inflammation. I wore a heavy vest for a few hours while the thing uploaded data. Being petite, I looked like I was wired with a bulky bomb. Bet I would have scared the life out of everyone had I walked into the post office. The results from that? Inconclusive. They actually learned more from the biopsy. I think my doctor had a brand new toy and wanted to play with it.
And there’s the problem with our health industry…sorry, off topic.
I’ve had a bad stretch this spring, too. Now that so many products are marked “gluten free,” I’ve found that I’m getting sicker than ever. I’ve learned to be very suspicious and add only one new item to my diet at a time (takes about a week to be sure). I’ve learned that manufacturers don’t take the supply chain into consideration. If they haven’t added gluten, then they can’t imagine that any of their ingredients might be contaminated from earlier processing.
One major thing that has come back to bite me in the past: spices from anywhere but Penzy’s. Neither McCormick nor any of the organic spice suppliers will guarantee that the spices haven’t been produced in a factory that handles wheat.
Brought in a housemate who likes to wash disches by hand this winter and learned that the dishwasher is the only way to safely clean dishes/pans that have come in contact with gluten.
When I’m having a lot of trouble, I dial my food choices way back to brands that I can trust such as Glutino. Also buy around the outside of the grocery store where all the fresh produce and meat can be found. The less processing involved, the safer you are.
Sorry you’re having to go back to the doctor. I’m trying to do anything I can to avoid some of those nasty tests. And I’ve lost about 12 pounds in the process.
It may indeed be back to the basics for me. Ironically, I received a package from a gfree company a few days ago with spices. Not saying it glutened me, but really felt horrible. Could have been something else.
You are definitely not alone.
First of all, I’m sorry to hear you are going through this right now because I know how much it sucks.
The last time I went through a spell like that I ended up seeking out a naturopathic doctor that focuses on integrative/functional medicine. We did some extensive blood work and found out a few things – one is that I had an active primary case of epstein-barr virus. This is the same virus that causes mono and chronic fatigue syndrome. The other thing is that my liver was inflamed and consequently, not functioning properly. There were also a couple of other levels that were “off” that needed help via supplements and nutritional changes.
The other thing we did was a blood panel to determine other food sensitivities and I was surprised to learn that there were some other foods to which I was highly reactive.
I hope you find the answers you are looking for when you have your Dr. appt. I know how frustrating and discouraging it can be to feel this way (especially when you look so normal on the outside to everyone else).
Hang in there and feel healthy.
Taking notes Chris…thanks so much for the tips.
Sorry to hear things are not currently going well for you GD. I am a bit surprised that you aren’t on a 6 month or yearly schedule for the blood work to monitor your Celiac disease. There are so many hidden dangers with Celiac chemistry. Though I never fail to be amazed that I am not anemic, yet have less than no energy.
May I recommend going back to your basic safe/soft diet for a few weeks ? Sorry to be saying this but no alcohol or dried fruit or nuts (it isn’t pleasant, but doable, and for me it is on a permanent basis). The damage done by Celiac Disease only begins in your small intestine, it affects your entire intestinal tract. A colonoscopy should be a possibility along with your endoscopy.
Celiac disease is a cruel disease. We can not defeat it, but need to learn how best we can cope with it, individually, and, with the support of our fellow sufferers.
All the best.
I’m sorry, but did you say anything after “no alcohol”? ( 😉 )
Why the no nuts? I’m on a pretty restricted diet already due to all these allergies and sensitivities so I eat a good amount of nuts. And I’m still having issues I haven’t pinned down to a source yet. I’m doing no alcohol and reduced sugar (just in fruit and honey) for 30 days so I’m a little cranky. Be careful what you say. 😉
V, I couldn’t eat nuts for a couple of years because they are so hard for my system to digest. Larabars and Kind Bars were my travel snacks, but I always felt crampy after it ate them and then lived in the bathroom for a couple of days. I discovered that insoluble fiber was just too tough on me until I had healed more. The “good foods” we’re supposed to eat like whole grains, brown rice, raw veggies, and many fruits were not my friend. I’m now able to enjoy them again, but it took two full years of eating bland to get to that poiint.. Dairy will never be my friend again. I miss you Pepper Jack! Certified gluten-free oatmeal bothers me, too.. Awwww the fun of a leaky gut! I would bet that every person here probably has some food(s) that cause a reaction.
Well, I’m down to Larabars for travel and emergencies since everything else has soy. The more I know, the less I know. What am I supposed to eat? Between my MS (anti-inflammation diet which cuts out some veggies), hyperthyroidism/Graves (no soy among other things; I’ve been told a bunch of other veggies I shouldn’t eat), food allergies (no wheat, eggs, dairy, yeast, bananas, amaranth), and being generally a healthy eater (no artificial anything), I’m so screwed. I’ve been told to get “enough protein” at all 3 meals plus snacks. I’ve been told to rotate foods. I don’t even know how to “eat bland” at this point since I can’t or “shouldn’t” eat most bland food either! But I would if I knew how and I could just feel better.
I make my own version of larabars at home and I like the texture and taste more than Larabars. The last few of their bars I’d had purchased looked like they’d been left in a 150º warehouse for five months.
Thanks Amy. I’ve seen recipes for DIY Larabars and Trio bars, so I’ll put that on my to do list. 🙂
I have been reading your blog from time to time because I have a celiac significant-other as well (Mr. Kevin)…. Aftter many years & doctors, he was finally diagnosed in 2008 with celiac disease. But along with his Celiac Disease, he was also diagnosed with Crohn’s / Colitis, gastriitis and a few other issues. He has arthritis in some joints and osteopenia in his bones from not getting proper nutrition over the years (have you have a bone density scan done?) – He basically has problems with his entire digestive system, from esophagus through to the end… Needless to say, we were quite surprised by all the additional diagnosis. I only say all this because maybe you should inquire with your gastro doc as to maybe you may have something else in addition to the celiac disease… Your post detailing your day yesterday, sounds exactly like many of my dude’s days… Here in NJ, yesterdays temperature were much cooler (dropped down in the 50’s) and that makes some of his other issues he has amp-up…and as a result, he tires easily and sleeps a lot too.
Anyhow, sorry to be so long winded. I hope your visit with your doc goes well and feel better soon…..
Where in NJ are you and Mr. Kevin? Just left there two years back and am now just across the PA border. And yes…it was cold yesterday.
I will indeed have him run a full gamut of tests.
Thanks for your input…and I’ll simply ignore the fact that you only read my blog from time to time 🙂
Lol… Fun stuff this celiac / gluten free-ness is (NOT)…. We are on the shore in Monmouth County by Sandy Hook and Seven Presidents Park (no where near Seaside and we are NOT those types of Jersey Shore people that MTV promotes! lol….). We are natives and live at the shore year round.
This blog is great and I am very glad we found it. I’ve been reading through everyone elses comments over the past few days, which pretty much mirror what Mr. Kevin has been going through these past few years. It makes one feel a bit better to see that we are not alone (cause sometimes it’s lonely in the celiac world)…. Especially when Mr. Kevin isn’t feeling so great and there’s not much you can do to help… Thanks Dude!
Grew up in Freehold (Springsteen town) and spent all my summers on LBI.
Hi IS the man!
Terri K, your man is lucky to have you.
I was dx’d with colitis first in ’93 and my GI refused to test me for celiac, I went GF in 2006 after experimenting with the foods to cook for a sibling with celiac. Turns out, I felt 150% better on a GF diet than before. Now, if I have gluten, I can tell within 24hours that I’ve been glutenized. My docs decided in 2009 they should test me for celiac. Didn’t happen. I’ve often wondered which came first, the celiac or the colitis.
Thanks Amy. I sure hope you are felling better….
It really just amazes me how many foods have gluten stuffed in to them… I would have never known about any of this important food / nutrition information if my Kevin hadn’t been diagnosed with celiac (and the only reason he got diagnosed was because my sister is a pediactric diabetic nurse of 20 yrs and she was the one who pointed us in the celiac direction).
At that time, she said its very common for diabetes and celiac disease to travel together – but we have learned that many of the auto-immunes travel in packs… My Kevin’s dad was a type 1 diabetic and it is assumed, by he and I, that his celiac is from his dads diabetes genetically somehow. I think it must run in his family because there are a few other member who have all the signs and sumptoms ( but they are in denial, lol)…..
Be well and keep on running gal!…
My siblings and I often wonder about mom and dad’s history. We know celiac is on Dad’s side b/c he has siblings that are celiac, though his doctor refuses to test him, even with one off spring officially diagnosed celiac. Mom has a great niece who is and that niece’s mom, my cousin, and I think our maternal grandmother may have been celiac as well. Mom and at least one of her siblings are diabetic. It makes us wonder about celiac, but trying to get medical doctors to test anyone, let alone someone over age 65, is extremely difficult.
We’ve encouraged our parents to go GF without have a diagnosis, but they won’t. 🙁
Gluten Dude, I’m sorry you’re feeling so rotten! I really hope you get as much rest as possible, and that your doctor appointments this week is productive and helpful. You’re definitely NOT alone in these recurring, chronic and highly annoying “mystery” auto-immune symptoms.
Terri-I know what you mean about family members being in denial. My beloved grandmother on my mother’s side I am 150% convinced died of undiagnosed celiac disease in 1987. Officially, her cause of death was listed as unknown. She was a gourmet cook and it was her mission to make sure everyone in the family was very well fed. As a result, she was around gluten all day, every day. During my childhood, she lived with us most of the year, and she confided in me that she was having bad stomach pains and never ending digestive problems. I asked her why she didn’t want to go to the doctor to find out what was making her sick and she simply said that she didn’t want to draw attention to herself. She only wanted to give to others, to the detriment of herself. It made me very sad that she was suffering, and no one else in the family seemed to notice. In the mid 1980’s after the death of her beloved husband, my Grandpa, her health got abruptly worse and worse, and she was finally hospitalized. The doctors ran test after test with no conclusive results. Eventually the doctors concluded that she was “mentally ill”. In her final weeks, all she would eat is ice cream. She told my Mom that the nurses treated her badly because she refused to eat and was so weak. My Mom told me that in her final days when she was barely speaking, she whispered to my Mom “it is not my head, it is my stomach”. She died a few days later.
My family, including my Mom, refuse to believe me when I tell them that all signs point to my Grandma having had undiagnosed celiac disease, and that her suffering is proof that it is definitely possible to die of this illness. Despite the lack of definitive clinical knowledge, I am proof that there is a strong genetic component to CD, even if it “skips a generation”. After I was formally diagnosed 10 years ago, I strongly suggested to my immediate family to get properly tested, but they all refused.
I know what you mean.
I am positive that my maternal grandmother had celiac, as are a few of my cousins. .
I asked a person on my paternal grandmother’s side, who does geneology and knows about the deaths on that side of the family, about there being celiac there. She said, emphatically, in the email that NO, the celiac must come from my paternal grandfather’s side and NO WAY could it come from the pure Irish line. (hrumph)
I have relatives on both parents’ sides with celiac and a sibling. . . and my GI refused to test me even though I have another autoimmune illness. (roll eyes).
Hi, really appreciate your posts. I was diagnosed with microscopic colitis last year via colonoscopy. I suspect I have celiac disease also, but I had been Gluten free for almost 2 months by the time my endoscopy was done. What worked for me was having some stool testing done via Enterolab and realizing I had antibodies in my colon not only to Gluten but dairy, soy and egg. As I have been on this journey my sensitivity to soy makes me feel even worse than my gluten sensitivity. Like the post above, you may want to start with removing dairy and then others to see if you have other foods that you are reacting to. Good luck with your GI visit, many of them are not kind to the idea of food sensitivities.
Yep…been dairy free for about six months now: http://glutendude.com/gluten/dear-dairy/
I could tell a similar story to every one else above ……10 years after diagnosis i am still having problems and still getting diagnosed with new related illnesses. Some key issues for me that you may want to ask about have been anemia – only resolved by several months on high doses of iron, hypothyrodism – my dose of synthroid is always going up, reumatoid arthritis, GERD, allergies and inflammation and I am told that stress makes everything worse including the celiac. i only feel better when I rest as needed, minimize the stress and keep up a daily regiment of supplements including B6 and B12, iron, Vit D, and a multi. The key thing seems to be reducing the inflammation within your system……..the fatigue comes from fighting the inflammation.
Sorry you are not feeling well, Dude. :<(
When I speak with newly DXed people, (not that you are new to this) I recommend the following FOLLOW UP CARE.
(1) Lab work should include:
I was dragging myself around for months after DX –but also suffering from insomnia–and I asked for my Folate levels to be tested and sure enough, it was tanked! as were my B-12 and D levels. Supplementation with prescription folic acid and B-12 and D– cleared it up pretty quickly.
(2) My doctor does a barium study of the GI tract to rule out lymphoma or other conditions.
(3) Also, a test for microscopic colitis, perhaps? (my friend with CD also has this and it causes fatigue and loose bowels)
(4) A stool study for parasites, Crohn's or other Inflammatory bowel diseases.
(5) a repeat endoscopy with biopsy to rule out refractory sprue
DIGESTIVE ENZYMES help if you have pancreatic issues that cause trouble when digesting fats and proteins. A good one is Digest Gold, but others may have suggestions as well.
PROBIOTICS are a must. A good one is the multi-strain probiotic from Custom Probiotics
or over-the-counter brand CULTURELLE. (found in any drug store or Walmart's)
Celiacs' leaky guts have an unbalanced amount of gut flora. This chronic inflammation can make you feel exhausted.
Here is why you need them:
All the digestive issues like acid reflux (GERD) and heartburn, excess gas, camping, diarrhea and constipation should disappear or diminish on a gluten free diet. If they have not, SOMETHING is going on.
VITAMINS: Most doctors (and fellow celiacs) recommend a good, gluten-free multivitamin.
And lastly, is there ANY possibility you are being exposed to low-level gluten somehow? That's usually the number 1 reason for poor recovery. I know you are careful, I am just throwing it out there.
I know this is frustrating and I hope you feel better soon!
I’m telling ya Irish…you should open your own clinic. You seriously know your celiac sh*t.
I was thinking the same thing. about IH. I never feel 100%, don’t even remember what that is like. I’m tired all of the time, but at least I can go lay on a beach. GD, maybe you and Mrs. Dude and daughter need a little R&R in Aloha land. I know it is not easy to get here, (lived in the DC area most of my life). But the offer is there. GF maitai’s!!
Sorry you don’t feel well. Good luck on Thurs. and I am going to write down IH’s suggestion for the blood test.
That would be so nice Aloha. I just may show up at your doorstep one day.
yeah, I do try to know my celiac s**t . 🙂
I did a lot of research to understand this beast.
This thing is a worthy foe and I can’t slay it unless I know how it thinks, morphs and behaves. I am a warrior and I can’t let it beat me.
I know, enough of the “battle analogies”…..
Last week, my doc says to me: “You should be a doctor”
Once I got past the hysterical fit of laughter, I said “yuck, who wants
to be around nasty sick people all day?”
The truth is, even they do not know all there is to know about it –and just sending patients off with a DX and a “just go GF”… is so wrong.
Your blood work should be monitored to make sure your systems are leveling off. The thyroid, kidneys, liver and urinary tract are all impacted greatly
And as many people can attest, various other autoimmune diseases can arise: Sjogren’s, Hashimoto’s thyroiditis (the leading candidate for fatigue) rheumatoid arthritis, lupus. and Raynaud’s syndrome.
The chem panel I suggested (CBC and CMP) will detect if something is elevated or depleted and if the Sed rate is elevated–it means inflammation.
A C-reactive protein test will show inflammation, too.
Make a list of your continuing symptoms and tell HIM what you want run. I think it is a good idea to go and get checked out.
Take good care of yourself!!
also, dump DAIRY for a few weeks and see if it helps?
sorry, I see you now have already done that. my bad.
I’m really sorry to hear this. Have you considered that you might have refractory or non-responsive Celiac Disease? For some people, the gluten-free diet is not enough and they need to be put on steroids to help heal. This is especially the case for those with severe cases of CD, which is sounds like you have.
You might also see if you have other food allergies/intolerances that might be preventing you from healing.
For the first 1 1/2 years after going gluten-free, I wasn’t healing. I was continuing to have a lot of symptoms and my antibodies were very high. I was getting really frustrated and wracking my brain as to why I wasn’t healing. I got tested for food allergies, and it turns out I have none. Both the doctors and I were puzzled as to why I was not making progress and I had a second endoscopy in Chicago. Fortunately, that came out good. Otherwise, they would have needed to put me on steroids for awhile. I also don’t get sick if I get glutened, so I very well could have been continuing to consume gluten by accident (especially in the first year where I wasn’t as strict as I am now). In the last 7 months, I’ve finally been making progress and healing and feeling better. But I remember I was in despair for a long time. Just about everyone in my town with CD that I knew was not having this problem (their antibodies were normal) so I really felt lost.
Anyway, I can understand your frustration. And just because I’m doing well now doesn’t mean I won’t have another bout of trouble in the future. That’s the charm with Celiac Disease: it’s lifelong 🙁
Thanks Rachel very much.
I ditto the thyroid panels. Also good to check iron, B12, calcium, magnesium, vit D, sodium, potassium, blood panel…I just just woke up, so that’s all I can think right now. We all seem to be struggling! This can’t be coincidence, Celiac Disease just is not as simple as some make it out to be 🙁
hi cutie! 🙂
Yes, the CMP and CBC I listed will include those tests you mention (potassium, calcium) for the Dude.
and YES, the D LEVEL IS A MUST!!
How are YOU doing? (I think G dude won’t mind if I ask?! It’s the only way I get to “see you” in cyberpsace now) LOL
As I’ve always said…my blog is your blog.
such a gracious Dude.
I agree with everything SC said. I have problems in ALL those areas. I also have Osteopenia (which makes working out so FUN).
The thyroid is very connected to CD. I am currently learning about it myself.
What I would recommend and it is a total pain in the butt (no pun), it to find a specialist in your most common areas of illness. I found that
(1) doctors don’t really now much outside of their area of expertise
(2) doctors don’t know a ton about celiac to begin with: they test us, then tell us to not eat gluten, tap us on our heads and send us on our way.
Also, I would really encourage your doctors to look into your absorption. ex: I was testing very low for thyroid, but still in the ok range but I don’t absorb the hormone my body is trying to produce, same w/ vitamin D and B-12.
I felt good for about the first month after my diagnosis and haven’t felt “good” since. I am so strict w/ gluten even in household products (I got sick from an envelop once), and still feel like exhausted garbage almost every day.
It sucks for all of us, but I hope you get some answers soon.Sometimes even if you have other crap wrong with you it’s helpful to at least have an answer.
Praying for your wife as well; I am not a sweet woman, when I feel frustrated and crappy.
I know someone who has serious thyroid issues and who has bowel issues, she refuses to get check for Celiac as it’d be “hard to live like that’. nice slap in the face. knowing that thyroid and celiac are two auto disorders that go ‘hand in hand’ it is hard to sit back and watch someone’s health deteriorate b/c they refuse to ask the doctor the ‘simple’ question of ‘please check me for celiac’.
It’s very frustrating when you are about people,if we could just stop caring :). That thyroid thing is almost as nasty as CD. people should really get checked. I have gained soooooooo much weight (115-192 in less than a year) and the weight isn’t the “big” part of the disease, like symptoms aren’t the big part of CD.
Amy, my mom said that for years…. she didn’t want to have to eat like I do – so, she refused to get tested. She FINALLY got tested about 5 years later, but thankfully for her – she was negative. But, it drove me crazy knowing there could be a diagnosis right in front of her but she didn’t want to see it. Also, how many times have we head, “I would just die if I had to eat like you.” Gee, thanks.
I also have friends who are concerned that their kids have Celiac – but their doctors think they are nuts and refuse to test the kid. I have never heard of such a thing. You know what doc, at least they are trying to get to the bottom of why their child is sick – so, deal with the parent’s fears and just order the test – prove her wrong if you must, just do the test!
Hi Kristin –
I heard someone say recently that if you ask to be tested for something and the doctor refuses (celiac specifically), to ask the doctor to put in writing why they feel that they shouldn’t test you. That normally kicks them into gear. 🙂 I had never thought of trying that.
That is a GREAT idea, Renee….I’ll have to pass that along!! Thanks! 🙂
It is a bummer that CD is like other chronic diseases…it may almost make you forget that you have it until it pops up and screams at you! I agree with the other comments that you might also address holistic approaches to wellness. CD is not just cared for by what you don’t eat, but by what you do eat to nourish your body and spirit. One comment above encouraged going on the very restrictive diet we were first on when CD is being discussed/diagnosed. Couple that with some acupuncture/massage therapy as well as exercise and good healthy foods. So much of the GF food are part of the over-processed garbage that everyone else eats. Why would we want to feed our bodies that junk? Just tasting good is not a good enough reason to consume something. Hope you feel better soon. I really like Kris Carr’s approach to taking ownership of our health!!
Agreed Cyndy. It’s not just about the gfree food. Thanks.
I re-read everything here and I have to agree with the suggestion about dumping alcohol for a while and going WHOLE foods only. Meats, fish, poultry, vegs, fruits, nuts, eggs, brown rice and GF coconut milk products.
Sorry Dude. :<) but if you feel better, it will be worth it.
I’ve only been diagnosed for a year but I’m not nearly up to par.
In addition to Celiac 12 months ago, I was diagnosed 7 months ago with Sjorgen’s Syndrome (another autoimmune disease) so the 2 autoimmune issues are sapping me and causing me so much joint pain. My Rheumatologist started me on Plaquenil (calms your immune system a bit) 4 months ago and believe it or not it’s reduced my gluten reaction from 6 days to about 4! (He did it to help w/ Sjorgen’s but said he had hopes it would help my autoimmune reaction to gluten and it has!)
All that to say…I suspect you need to be checked for other autoimmune issues, often times if you have one AI issue you get another…
I’m so sorry Dude. It’s kinda crazy but I’ve just accepted that several days a month I’m “down”. I need naps and feel disoriented, weak and ache terribly. Sending you a gentle hug and a prayer for the doctor to have some good ideas…(can you get a referral to a Rheumatologist?)
Please keep us posted~
Thanks Robin. Whenever I have a bad day, I always say to Mrs. Dude “Tomorrow is another day.”
I’m sorry you’re having to go through this! I know firsthand how lousy it is to start feeling good for the first time in your life, and then have it go totally downhill. Celiac disease sucks that way… autoimmune disease begets other autoimmune diseases (like Hashimoto’s disease and rheumatoid arthritis) and just when you start feeling better, whole new sets of symptoms raise their angry heads, and you’re left once again trying to untangle it all. I sincerely hope you have a doctor that will actually listen to you, rather than have his mind made up before you’ve even opened your mouth.
I’m going to the GI that diagnosed me so I’d like to think he knows his stuff, but I will be armed with info. Thanks.
I agree ! A good doctor is the key. Took me 25 years to find one–and that was AFTER I had figured this damn thing out myself.
Hi Dude –
Sorry you are feeling so bad. I know I have mentioned it before, but make sure you get your thyroid and B-12 levels tested, like some others mentioned above. Thyroid problems and vitamin deficiencies can cause a lot of issues. I know you read my blog post about my Graves’ disease already, but seriously, I was having major gastro symptoms that I couldn’t figure out. I was eliminating this and that from my diet but couldn’t fiure it out. Turned out it wasn’t food! I had even returned to a GI doc after 15 years of not needing one since my CD diagnosis. I had the GI doc stumped, he thought I might have eosinophilic gastroenteritis and was getting ready to test me for it. Dang Graves’ disease instead.
And now I am on rheumatoid arthritis watch too… grrr.
Also, a bone scan is a good idea, to give you a baseline for the future, if nothing else. And the elimination diet is a good recommendation too.
Best wishes to you. I hope they can figure something out. But remember, we have to be our own best advocate and do the research and make suggestions. And then if we don’t feel we are getting good care or being listened to, then we have to move on to another doctor who will listen. Unfortunately it may take a while…
I am sure you will keep us posted!
B-12 and Thyroid at the top of my list…absolutely. Thanks Renee!
And one more thing, have you had your tTg, EMA and AGA-IgA, etc tests done recently? Are your levels low?
Had em done in November as part of my physical. They were low.
I’ve been mulling this over all day and I can’t add to the list of tests that others have suggested you ask for. Looks like some good suggestions to me.
BUT I do think you should take a good look at how you SHOULD feel.
Seriously, you’re busy with a young family, you work at home (which means you are always on-call and always at the office), you have a busy social life a busy blog and you get your share of exercise. Your own daughter commented on your blog that she doesn’t know where you get the energy for it all.
Yesterday I was on my bike feeling the burn and thinking I am way too exhausted when I glanced at my speedometer and discovered I had been breaking the speed limit for half an hour. Perhaps it would help you understand how you feel if you take a glance at your own speedometer.
I LOVE thinking outside the box calgary. Very perceptive and I will indeed watch my speed.
I totally understand how you’re feeling, I was diagnosed in 2007 and once I got going on my GF diet things were grand then last year it all went to hell in a handbasket. I felt like I was relapsing though I was so careful. A family friend recommended a naturopath that she had been seeing and out of curiosity I decided to check it out. I was skeptical at first especially when she told me in addition to being a celiac I also had candida as a result of an allergy to cane sugar (which BTW is in everything…you can imagine the ?? that I had), After a 60 day intensive cleanse to get rid of the candida and restore my digestive system to order again I was a new woman. On a go forward basis I eat little to no cane sugar, I use only natural sugars (like honey, and maple), and I cook and bake with organic palm sugar which is actually really healthy. I even make my own ice cream.
The long and short of my little story, have you ever seen a naturopath? They may be able to tell you things about you that traditional medicine can’t or won’t. If it hadn’t of been for my naturopath I would never have found out about the candida or the cane sugar allergy and I would have spent so much time and energy seeing traditional MD’s, feeling horrible only to be poked and prodded and told I was crazy or depressed…2 things that I am not.
I wish you well friend!
Thanks Jen. I’m sure a naturopath is in my future…
Not one of us knows more than you do about how to avoid gluten foods and cross-contamination. If you are in fact still getting glutened, have you investigated a non-food glutening? Is there something new that you are breathing in or coming into contact with that may contain gluten?
Check to be sure Mrs. Dude isn’t using a hairspray that could contain wheat, (I’ve read that hair salons are notorious for “glutening” celiacs.) Soap? Shaving cream? Anything containing vitamin E? Vitamin E may be derived from wheat so you should verify the source before using or taking something that has it. At least you don’t have to wear makeup and lipstick. Good luck on finding any that doesn’t have vitamin E…but I digress.
I ditto the possibility of a coexisting autoimmune disease. In addition to the suggestions in other comments, look outside the “normal” autoimmune box. For example, I found out from my daughter-in-law that Narcolepsy is associated wtih CD. Her doctor is now checking her for possible Celiac and said even if negative, she wants her to go on a trial gluten-free diet to see if her symptoms improve.
If you are getting a pain anywhere in your abdomen immediately after eating, ask your doctor about a sonogram on your gallbladder.The gallbladder is referred pain so you can feel pain anywhere. I had gotten so much better after going gluten-free, then began to slowly take steps backward. I would cut out one food, then another, then another trying to identify the culprit.. Long story short, it wasn’t a specific food that was the problem. It was any food that had fat either natural or added. I have learned that most Celiacs have either had their gallbladders removed or will have to have it removed.. Once the digestive system gets toasted it seems nothing is spared.
Finally, it sucks, but alcohol needs to be ditched until your gut heals. Yes, I sympathize. I can’t watch any of the “Real Housewives” without wanting to punch the crap out of them for always having a glass of wine or a cocktail in their hands. Okay, that’s not the only reason.
I know you will keep us posted.
Who says I don’t wear lipstick and makeup? Wait a minute…did I say that out loud?
he he he
keep that sense of humor….it’s your best weapon
I’m not diagnosed or anything…wild horses couldn’t drag me through a gluten challenge. And I’m not a doctor.
That said, gluten-free was not enough for me. I did not “feel” healed until I adopted a paleo/SCD/GAPS type diet. (SCD, although complicated, is designed specifically for gut healing.) Now I avoid all grains (even gluten-free ones), processed sugar, starches, legumes, etc. These are very inflammatory to the digestive tract. About that time I also gave up strenuous exercise, because recovery competes for the body’s resources in healing the gut.
Now most days I feel normal and energetic. And that’s a real normal, like I haven’t felt in at least 5 years. The way you’re supposed to feel, that most people take for granted. Night and day. No more daily triple latte necessary. People comment on how I’m a completely different person. I’m still working through one final issue with my GI doc and HMO, but other than that I’m good.
I wish you the best of luck in your search for answers and health! Have you seen an integrative/holistic health professional? You might look into that, or find someone to lead you through SCD.
Vitamin D level should be checked
If you’re off dairy, you need some vitamin K2 (not K1)
So you haven’t had any tests at all in six years? I was diagnosed in November by what I call an accident. To confirm gallbladder issues I had several tests done, one being an endoscopy to rule out an ulcer. Didn’t have an ulcer but woke up to hear the doctor say I had CD and that he took a biopsy to confirm it, which it did. (Finding out I have CD has explained so much!) I have been back to the GI doctor twice for blood work and I go back in two months for more. I still have elevated antibodies and liver enzymes, even though I have been GF since the beginning. Supposedly, Celiac and elevated liver enzymes go hand in hand, but should improve on a GF diet, so far mine hasn’t. I also had low vitamin D (which has been corrected with supplements) and I have a low iron saturation which has not improved and if it doesn’t we are looking at iron infusion. My doctor also performed the genetic testing for Celiac and I have the DQ2 gene (which I felt was just another nail in the coffin, lol).
When I first ran across your blog and read about you sleeping more than a two year old, I thought, “Oh, my gosh, I can’t believe it, that’s me!”. I was so astonished to find someone else that napped alot. My naps were never less than 3 hours. I would come home from work eat dinner, take a two hour nap, wake up for about an hour or so and go to bed. BUT not anymore since going GF! So thanks for your blog I really enjoy it.
Oh, Fonda! This sounds so familiar. The sonogram looking at my gallbladder discovered multiple cysts on both lobes of my liver. Thankfully a follow-up MRI for that showed they were non-cancerous. I’m very protective of it now and try to not tax it. I hadn’t noticed how yellow the whites of my eyes were until they cleared back up! I had already been gluten-free for three years before this cropped up.
Yeah…I know. I probably should have gone back to my GI sooner. I think it’s my overall general lack of faith in the medical community when it comes to celiac (and a lot of other things.)
Hey Gluten Dude (or anyone else on this blog that can assist……), when you head back to your G.I…..will you ask how often he/she thinks blood tests should be repeated? I also lost faith in the medical community after being told by my diagnosing G.I. that I could eat a cracker here or there – I would just have to figure out how much I could tolerate. I adhered to a strict gluten-free diet – and a year later had another endoscopy that made my new G.I. even question if I had Celiac. But I still felt sick. I endured barium swallows, CT scans, MRI scans, numerous blood tests… they found all sorts of other fun stuff (ovarian cysts, thyroiditis, etc) but nothing that explained why I was still having stomach issues. So, I received the …”oh, you must just have IBS on top of Celiac Disease”. Ugh. So….I’m sure much to the dismay to many on your blog here – I quit going to the G.I. I haven’t seen one in 5 years. I know, I know… not smart – but I just couldn’t take it anymore. I felt like I knew what I needed to do for the gluten-free diet – there appeared to be not much more a doc could do for me. But, I do wonder from time to time if I should be continuing to have my levels checked. Any input from anyone out there would be greatly appreciated. Thanks…
If nothing else Kristin, get a complete physical once a year from your Primary doc and have them do complete blood work, including your celiac levels.
I B S
stands for the doctors thinking
It’s a catch-all syndrome for “alternating bowels” of constipation and diarrhea and abdominal cramping and I was given that DX back in 1997. I know now that it was celiac all along.
I have none of that stuff anymore, unless I am CCed from gluten.
If you are still experiencing bowel issues, you may need probiotics to restore your gut flora.
Hon, you want to have the panel of tests I listed above for the Dude.
ALL CELIACS DESERVE and NEED follow up care. This is a CHRONIC, life-long disease. Yes, symptoms go into remission, and yes, people can and do feel GREAT after a few years, but complications arise and other conditions walk with it, so you need to find someone who will help you with your follow up care.
For the record, people think our immune systems are weak; on the contrary, it is strong and working like mad to counteract the gluten attack.
Our bodies can rebound if given the right circumstances.
It could be that many of you just need to replenish your gut with the “good guys”–probiotics.
I B S
stands for the doctors thinking
SO TRUE!!! ha ha…..
I was taking probiotics, but slacked off – they never really seemed to help me much, but maybe I didn’t give them enough time. Also, finding a good doc to assist you in follow up care is quite difficult (especially when you are limited to who your insurance company says you can see).
I will take your advice though and have my doctor run those tests. I guess I have just slacked off and figured “this is what life is like with Celiac”. :-
Call the local celiac support group or hospital and ask for a list of celiac-savvy docs in your area! They will know.
P.S. What are the best blood tests to detect celiac levels post diagnosis?
I am guessing you mean the gluten antibodies that may be present in your system?
The Celiac Panel can measure your immune system’s response to gluten in the food you eat. But if you have been on a strict GF diet for 5 years, there should be negligible levels at this point.
tTG-IgA or tissue transglutaminase-IgA
AGA-IgG or Antigliadin IgG
AGA-IgA or Antigliadin IGA
Try the probiotics. I take them every day and I am “right as rain” as a result. I take a week off every few months.
Correct…. and actually I have been on a strict gluten-free diet for 10 years. I was just curious if there was a specific Celiac panel test that would be the best to show if I am getting “glutened” and not realize it.
Yes, hon, that’s what I am telling you.
This is the test that detects gluten antibodies in your system.
If you are being glutened, the level of gluten antibodies rises. That’s how celiac works.
If you are concerned that this is occurring, that is the ONLY test that can detect that.
( or having a biopsy of your small intestine.)
I’m so sorry you’ve been hit. I’m learning that the celiac community won’t leave a man behind. I had to keep with Irish Heart’s battle analogy because that’s what this is and we all need reinforcements.
There are so many good suggestions here. Several have been the key to getting me out of a health slump: finding gluten in hair products, supplementing vitamin D, limiting (never, ever eliminating) alcohol. Some are on my radar: limiting processed g-free foods, making sure I get enough R&R to keep my immune system strong and maybe (only maybe) cutting out all other grains in the future.
I was so in tune with my body before fourteen years of being dismissed by doctors made me doubt my instincts. I had my celiac panel run at my one year anniversary and found that my levels are within the ‘normal’ range. That was a bit of encouragement. I’m taking my authority back and it’s all thanks to you and this generous group of people so willing to share their experiences.
Take in all the information, see what your doc has to say; but at the end of the day–I can’t help myself–you have trust your gut, Dude.
Hope tomorrow is a better day.
I like the pun Kim and totally agree with it. Thank you.
Trust your gut…indeed 🙂 LOL
I say that one often myself and wonder if people think I’m being a wise arse.
But, it’s the truth!
If I had not trusted mine and STOPPED listening to doctors AND
naturopaths alike, I’d be dead. They ALL got it wrong.
Make your list, take it to the doctor and do not leave until your questions are answered and you feel as if you have been heard.
We pay THEM.
I think that once we are diagnosed there is an exciting reaction, that says YES we are not crazy there is a name!. And then, we settle down, and start our journey into the gluten free world., then we realize there is no gluten free world, it is only in our own house. and occasionallly a rest. gets it.
GD, you have done all the best you can, but I firmly believe that how long one has been misdiagnosed, causes problems forever. And not one doctor will be able to guide us.
AND, I am serious about you and family coming here, I have no support group whatsoever, Hawaiians, and all other ethnic groups here , do not have celiac. So far I’ve reached out to the newspaper (wrote an editorial about May being celiac awareness Month,) it was surprisingly published,), However, there is no one else here. to help, no doctors, nobody.
So far, Just me.
I did go to “celiac.com” website and I got the name of a gal that supposedly was still here, , she emailed and said, she was no longer on the island. …
My best friend , stopped having us over for dinner.
You are in my thoughts.
I am happy to email or Skype with you 🙂 or talk to you on the phone –anytime.
I have met people for lunch and go over their diet plans with them. I help them go shopping, if they want. I provide a “Newbie 101” starter info plan. I Skyped with a Mom in California desperate to help her sick child with seizures and stunted growth when the doctors did nothing but offer GERD meds. She KNEW it was gluten, but they disagreed. I said Follow your gut instinct, Mama.
That kid is flourishing now! I get updates and pics all the time.
No one should do this alone, hon.
Anything I can do to help, I will.
I know what you mean about people bailing on you when you need them most. My “close friends”–same thing. Made me very sad. When I became very ill, I was stunned by what transpired. But some others surprised me by their unwavering loyalty.Adversity reveals true character. The good, the bad, & the ugly.
Call on me if you wish! :).
Irish Heart, I did go to celiac.com and when I looked you up, your e-mail address is private. Thanks for your kind words. You should be a doctor! I am learning as much as I can, and don’t have a problem with the grocery list, GD has mentioned a website before with some wonderful recipes.
The friend I mentioned asked us for dinner tonight, she is making chicken fried steak. hehehe, I just have to laugh. I can see the flour flying all around the kitchen. She asked, I’ll make a salad, can you eat croutons? I’m bringing my own food on my own plates, and lots of wine.
So, if we can chat privately that would be great, I appreciate your concern and taking the time to help me out.
Julie, just PM me and I’ll be happy to give it you!Are you Aloha Julie on there too?
IH, I was just “julie” but I changed it to “Aloha Julie” b/c there was two of us. What does PM me mean? sorry, not all that computer savvy, and getting ready to head out the door, I’ll check back later.
Sorry, hon—thought you knew.
PM means personal messenger.
You click on “send me a message” on my profile page, and you write me a note and I will get a notification by email (just like we do with the Dude’s blog) and I’ll PM you back and give you my email. Or I can PM you with it….
My cousin lives somewhere in Hawaii, and is strictly gluten-free (for reasons other than celiac). You are not alone!
Jessie, I appreciate your comment, but having a cousin that lives somewhere in Hawaii and does not have celiac, really does not help me. Hawaii has an area about 10,931 sq. miles, the size of Connecticut. Then there is Oahu, Maui, Kauai, Lanai, Molokai.
So far, on my island, I have not met one person, including the medical community that is familiar with the disease. I had an episode recently that put me in the ER, and the nurse did not know what is was. My gastroenterologist knows very little about the disease, he just said don’t eat gluten and if you start feeling worse, come see me. My primary is learning from me. There are no support groups, not one friend, server in a rest. or anyone I’ve asked, ‘do you know what celiac disease is”, knows what it is. That is how it is going for me here. I need blogs like this one, and I don’t think I could live out here with celiac if I did not have the internet to rely on.
I wrote an editorial in the local paper that got published recently, trying to get some sort of awareness going on.
I haven’t given up, there was a comment recently about someone on Maui that blogs and twitters concerning celiac.
Have you considered going totally grain free? I was against it until a few weeks ago. I started feeling sick again. The only grains I was eating were GF oats and brown rice, but I still ate GF cookies and what not once a week or so. I had a reaction to a GF cereal that was not certified and started doing some research on diets. I decided to try a totally grain free diet ( ok.. I have one OR two cheat meals a week and eat certified GF grain). I have seen great results. My energy levels have sky rocketed. Stomach issues have improved and it has been wonderful. I don’t feel like I have to sleep 9 or more hours a night! I also have a lot of food allergies, so I have cut those out as well ( I am allergic to chocolate…… not cool ). It might be worth a try… If only for a few weeks to give your system time to reset. Wish you the best!!
I like KIM COACHMAN’s line!!!!!!!
“the celiac community won’t leave a man behind…..( this is a battle )
and we all need reinforcements.”
like the Marines and the Navy Seals.
No one left behind.
Nicely said, Kim!
I apologize for not having read all the responses; however, I would push for an allergy test.
My allergy screening came back negative–even for the “control” to which everyone is suppose to react.
However, I was also–and still am–on an immunosuppressant drug at the time, so I think the results were void because of that.
I find that almond milk makes my intestines bleed if I drink it for a few days in a row (I tried almond milk for one week, that was it–love the taste, body can’t handle it), I try to minimize the almonds I actually eat b/c of this other reaction, so I make my own date bars at home with walnuts.
I find that soy bothers me (but I can’t really tell soy lethicin does which is found in chocolate). I get hot flashes and colon/bathroom issues after about half an hour.
I will say I feel better when I eat little to no grains. I have cut back on my dairy. I am not paleo, but I think I’m as far as I’m able to go at this point in my life. We do occasionally have nacho corn chips (hmm, home made nachos–baked on a pampered chef oven stone and then put under the broiler for a few minutes).
Hmm, everyone’s pretty much suggested what I would suggest 🙂 Especially about testing for other sensitivities, I still have problems with dairy, beans, coffee, and most recently corn. Going primal/paleo last year helped me a lot, too – carby grains and gf breads end up making me feel bloated and yucky, so I try to avoid them.
You’re definitely doing the right thing by seeing the doctor again. Even if they can’t figure it out, they can get the hard results from tests and you can go from there.
You know, someone should come up with a Celiac Retreat where we Celiacs can vaycay & everything it catered and safe. Stress certainly never helps people heal!
I hear ya, Kara, on the thyroid issues… I’m just starting with that whole mess and have gone from 129 to 185 in less than a year. It’s so depressing trying to eat healthy but still watching your weight increase by a pound a day!
Aloha Julie, have you seen this: http://paper.li/gfreemaui/1330141318 On there, you’ll see that her Twitter feed is on the right of the page.
Dude, I’m really hoping you’ll post back and let us know how your appointment goes. I need to go back and request more blood tests, based on what I’ve been reading here, and how I’ve been responding to the meds I’m on. I’d be curious as to what you were tested for, as well.
Llisa, no I have not, thanks allot, I happen to be on the Big Island, Hawaii. On a clear day I can see Maui from my back yard. This blog is great GD!
While I’m sure these have all already been touched on, I would suggest investigations for graves disease, as it operates in similar ways to CD, H-Pylori virus, and crohn’s/ colitis, all of which are investigations I’m currently undergoing. Ask your GI for a free T4 and TSH check specifically, those will rule out graves. I think H-Pylori is a stool sample, which could also cover crohns, but you could try a colonoscopy too to see if it’s something affecting the other end. Good luck, hope you feel better. The other thing I noticed is that I have spells of feeling unwell, they show up randomly, last for a few weeks, and then I’m back to normal. Perhaps it’s just coincidence? As for a band-aid, gravol and I are best friends. They have a non-drowsy gravol that is basically just ginger. I hate taking more medication as much as the next celiac, but when it’s that or not being able to function, I’ll take the gravol. Also, the quick release and long acting kind knocks you right out so it’s great if you’re in too much pain to sleep.
The list of possibly related autoimmune diseases is vast. In my case, it turned out I also was hypothyroid and had Addison’s Disease (adrenal failure) and M.S., all of which are more common in people with celiac. I know people with autonomic disorders who also have similar symptoms as well.
In my case, any activity is completely exhausting. I need to lie down several times a day and my brain feels like soup. And I sleep so much on and off during the day that my circadian rhythm is shot. “Fatigue” is so not the same as “tired”!
Getting help or any kind of diagnosis from doctors… Let’s just say it took a long, long time in my case. I really feel for you. Is fatigue your biggest symptom? Even something like hidden sleep apnea could be responsible for that. It’s like hunting for the proverbial needle in a haystack….
Among the other sound suggestions, I’d also second the folks here who mention other allergies (especially if there are continuing GI or skin issues), often better diagnosed by an elimination diet than a doctor. (I had the Head of Allergy and Immunology at a major teaching hospital tell me, a year before someone else diagnosed me with celiac, that I “couldn’t possibly” be “allergic” to gluten. She also urged me to eat dairy, something that makes my throat swell up. I have no respect for mainstream allergists… actually, for a lot of doctors…) Good luck to you.
I’m sure you get more than your share of unsolicited advice but I’m going to respectfully add my comment. I was diagnosed with MS 7 years ago. It should have been 2 years earlier.
MS fatigue is a helluva bitch. The changes in my diet this past year since allergy diagnosis have improved my energy level but I still have the fatigue. Yeah, I know that doesn’t make sense to most people, but I swear I have more energy and a lot of fatigue! 🙂
If you are not taking medication for your MS fatigue, you *need* to ask about taking Provigil. (Nuvigil is the new knock off; the only thing I have against it is the marketing campaign.) I was reluctant to take a narcolepsy drug but I take a half dose and it really helps with my brain fog. It’s not gone, but given that I also have thyroid disease (was hypo, now hyper), Grave’s disease, and Vitamin D deficiency, which all have fatigue as symptoms too, it’s a lot better. I can sit down and read something without falling asleep! I don’t know that I’ll ever wake up refreshed like normal people, but at least I can function and listen to people say “but you don’t look sick”! 😀
Best of luck to you.
Thanks V. I don’t mind advice from anyone living with similar problems at all. If you only knew…! Provigil is great advice. I’ve been on Provigil for 2 years and it’s been transformative. I still have horrendous fatigue, but compared to before… there is no comparison, as you know. At least now I can get a few hours in the day where I can read and comprehend what I’m reading, feel somewhat lucid, drive safely, stay awake… But then we were forced to switch our pharmacy benefit manager from Medco to CVS/Caremark this year. They revoked my approval for Provigil, and I’ve been fighting ever since to get it back. I am now running out of pills and will be spending $850 this weekend for a one-month supply without insurance, praying through some miracle my current appeal is finally granted before they run out in 30 days. CVS/Caremark claims there is no evidence that Provigil works for MS fatigue. They said there is no double-blind, placebo controlled study that supports that use of it. They lied. I have the studies to prove it. But it seems like they can just say anything they want and that’s that.
Sorry, Dude, to take up so much space on a non-celiac matter, but I think it also speaks to the larger issue of how messed up and cruel our medical “system” is. And I feel for your mom, Dude! Addison’s is tough! Very interesting that is in your family, too. I don’t know how heritable it is, but perhaps you should have your own cortisol level checked (don’t know if that’s part of all the bloodwork you’re doing anyway)? I do know that celiacs are at higher risk of having it.
Ask your doctor to submit the research to the insurance company (I had to do that with one insurer) rather than you doing it. Also, since you are close to being out, ask your doctor for samples of Nuvigil to tide you over. Since it’s newer, they may still be giving samples to the doctors. I really don’t understand how these pharmacies decide what to charge. I’m on a high-deductible plan, so I pay about $450/mo (15 pills!) and the insurance company pays less than $100 as I understand. I was recently moved to a generic and it is still over $400 but saves me about $50. On the upside, I hit my deductible pretty early in the year! 🙂
Wow…that’s some deductible you have there. Sorry to hear it! Ugh. My doctor has written letters, called them…. He completely understands what’s at stake for me and has been more than willing to help me fight it. The most recent contact he had, he spoke to a “doctor” at the insurance company. My doctor kept saying he had research papers that support this use, and the “doctor” on their end just kept repeating that there was nothing I could do about it. My last insurance company required an authorization and made me jump through a hoop or two, but they acknowledged that this was an accepted use and let me have it.
I’ve heard some bad stories from people who’ve switched to Nuvigil, and I didn’t want to risk feeling any worse after finally gaining some kind of delicate balance. The price is the problem. It’s actually not the pharmacies, but the manufacturer. They’ve been raising the price dramatically in recent years in the lead up to the patent expiring, and have been doing everything they can to keep the patent in force for as long as possible. The $850 is the cheapest I could find from any pharmacy in my county, because they have a special in-house discount plan. Most other places wanted closer to $1,000…for the generic.
Thanks again for your input. I do appreciate it.
My mom actually has Addison’s disease. Real energy killer if you don’t take enough cortisone.
Hope MamaDude was tested for celiac, too.
There are no coincidences with this thing.
Hi Gluten Dude- I can’t wait to take the time to sit down and really read all of the responses you have received. We are in the same boat….one year in and nothing has changed with immune systems, energy levels. It’s so incredibly frsutrating. If anyone would like to weigh in on our circumstances, I would appreciate it. My 6 year old was diagnosed a year ago and still has a TTG level of 40 despite our OCD like lifestyle. Her immune system is shot and she had over 35 absences from school. My 13 year old has lower numbers but she too has way too many illnesses. I am trying to figure out the worse insomnia I’ve ever experienced and a total lack of energy. We are a hot mess to say the least. Getting the diagnosis was exciting to me because we finally figured out what was wrong and I was so hopeful that by this point, my girls would be so much healthier. NOT! Thank you for sharing your journey Dude….I can’t wait to find out what your doctor decides. Best of luck!
Rachel, insomnia is one of the first things that sent me to the doctor. Horrible insomnia. I spent years of my life in sporadic 2-hour naps if I slept at all. I put that in past tense because I was given a prescription for Ambien-CR. The first night I took it was the first time I had slept for six consecutive hours in years. I know it doesn’t work for everyone, but for me it was a lifesaver. After years of being gluten-free, I still suffer from it. Now I wonder if insomnia is a common issue for those with CD. I would love to know if others have this problem.
Raging Insomnia plagued me for years. At the height of severe illness from unDxed celiac in 2008-2010, I barely slept 3-4 hours some nights. Not kidding. YES, ironically, insomnia is a celiac symptom as is extreme fatigue. I envy people who can take a nap.
Sometimes, I wonder how I survived all that madness. I was so exhausted, but could not sleep. I was a jittery mess, having awful nightmares, screaming myself awake most nights. My brain was so messed up from gluten, I was unable to think straight. I even had a sleep study done. They determined I never went into REM sleep. My poor hubs.
For the first time in my entire adult life, I sleep 6-7 hours straight now :).
Apparently, according to my parents and siblings, I even kept the whole house awake as a baby, a toddler and small child with my insomnia.
My poor Dad walked the floor with me, trying to get me to sleep.
I have posted this on Dude’s site before, but there are over 300 symptoms of CD. Insomnia is just one:
Yep, chronic insomniac, here, too. Always have been, even as a baby, too. And when I do sleep it’s usually nightmares or twisted dreams, and rarely more than 2 hours at a time. Always tired/fatigued, but can’t sleep/nap.
Hopefully, that will get better for you soon, honey.:)
I know you have been struggling for some time now.
I never thought I’d sleep solidly again in this lifetime.
but I do…amazing what happens when we heal.
Gluten messes with our brains.
I had WICKED nightmares on that sh*t.
Hallucinations, too. And I was never, ever going to tell anyone except hubs about that –people would think me mad–except I met two others who had it happen. One was this cool 75- year -old woman who said it right out loud at a celiac meeting and I said” Oh thank GAWD someone else said it–Me, too!!”
She gave me a big hug and I said, “I felt like I was tripping”
She said “YUP– it was pretty crazy, huh?”.
I do NOT miss all that weirdness!
I looked at all the comments on this post but there’s one other possibility I’d like to mention a condition that’s very common amongst celiacs that many people aren’t aware of, but it’s *extremely* common (at least here in Australia): fructose malabsorption.
Fructose malabsorption is apparently at least half as common as lactose intolerance and a common cause of IBS. A hydrogen breath test can diagnose it fairly well.
I have family who thought they were extremely sensitive even to the slightest cross-contamination of gluten. We went gluten free after inconclusive tests but one member was still struggling. One time I remember fruit being the only option on a long overseas flight about 10 years ago and later on during the flight she felt like she was dying and didn’t know why. It took several years after that before she found out she has fructose malabsorption.
Some of the worst offending foods are apples, onions and honey – and these usually need to be avoided like the plague. Fruit juice concentrates are lethal for those with the condition. Wheat is also a problem for people with fructose malabsorption because it among the highest grains in fructans so the condition can mimic gluten sensitivity at times as well. It can also occur due to damaged villi.
In any event, if all else fails, it may become something to consider. Here in Australia it seems fructose malabsorption is more common amongst celiacs than cow’s milk, soy, eggs or just about anything else.
Wow, thanks for that, IM. I never would have thought about fructose malabsorption as something that may mimic cross-contamination. I’m going to have to start checking labels for that, too, now.
The “Allergy Detective” iPhone app helped me identify what trigger foods were causing symptoms. You would think I would know, but I was surprised.
If you want contact info I found this email in the “Contact us” screen: email@example.com.
So I haven’t taken the time to read all of the other comments (shame on me) because I just wanted to skip ahead and respond.
I too have spent all of my time since diagnosis not feeling better. Most of the time anyway. I have done so much research and that is what recently brought me to the Paleo diet. The more I read about it the more I know it’s what I need to do. I have been doing it a little here and there. But it involves giving up so much more than gluten.
There is so much research out there that says that gluten free Celiacs still aren’t really healing. We are still suffering. And mostly because of a leaky gut. The gut needs to be healed. And because of all that we’ve gone through our bodies are starting to react to more foods the way we react to gluten. For instance the dreaded list of 18 “cross reactive” foods. No coffee, no chocolate, no alcohol, no dairy, no fun, no life.
I myself also have Hashimoto’s Thyroiditis. And I know that it has taken me years to get on the right medication and at the right levels. When my levels are off I become a zombie at exactly 2:00 every day. I also work from home, Thank God. Because at this stage in my life and the way my body rebels I don’t think I could function in the average work force.
So now I think I’m rambling. But I just wanted to say I am there. I am also searching. But I’m just not trusting the doctors to find the answer for me. Been there, done that and I’m the one that finally had to say ” I think I have Celiac disease” It’s up to me to find what will work for me. Now I’m going back to read the comments and see if you’ve found an answer!
I’m sorry, but that “cross-reactive” theory–is just that. A theory.
Believe me, I’ve researched it endlessly. I had a neurobiologist research it too. No published, peer-reviewed information whatsoever that celiacs “cross-react” with coffee or beans or anything. It’s based on a chiropractor’s theory.That’s it.
No other food proteins are proven to “mimic” a gluten reaction except for those in dairy.
If this were a real health issue for celiacs, the celiac research centers would make sure we knew not to eat those foods.
People who are celiac advocates (like GIG) have stated emphatically, there is no such thing as “cross-reactive” foods.
If people are having trouble digesting foods, it is because they have not healed their guts.
Gut permeability can be determined by testing, if this is a worry.
It takes YEARS to fully heal the small intestine. It’s approx.22 feet long. The large intestine is 5 feet long. That’s a lot of area with crypts and cells and villi to heal. Does it suck that it takes so long? yeah. Big time.
Many celiacs DO develop other food intolerances and allergies.
These can make it very difficult. I had to figure out so many of them, too, but the only way is through elimination diets. Allergy testing reveals nothing for many of us.
It’s a pain in the ass. 🙂
It’s true, I asked the University of Chicago Celiac Disease Center and they said they have found no evidence of “cross-reactivity”.
Hey! Hi cutie!! long time no see. I guess I have to come read your blog soon and see what you’ve been up to!!??
Thank you so much for your comments here, they have been so helpful to me!
May I ask where you get your information? How do you go about researching it? I want to be my own advocate, and I think I’m going to have to be anyway because I can’t find a doctor here that knows anything, but I want to be well informed.
Of course I read a ton online, but there is just so much and it is hard to know where to start and what is valid and what isn’t sometimes. Especially with a lot of the outdated information out there.
Just this past week my intestines started bleeding, so I really need to know what step I need to take next. I am already on a Paleo type diet, so I’m not sure what much more I can cut out of my diet, though I have not started a probiotic or enzyme yet… any suggestions? I can’t eat soy like many others here, and that seems to be in all the supplements I come across.
Bleeding in your intestines?? You mean there is blood in your stool? Hon, you should go to the ER and have an fecal occult blood test done ASAP.
A good GF probiotic is Culturelle or Custom Probiotics.
Enzymedica Digest Gold for enzymes.
Many supplements are soy free (I do not do soy either) and you could try Country Life —-Certified GF and no soy.
I read constantly, in answer to your question. I want to know this beast inside and out.
Celiac centers provide the best info, like this one
and this one
Celiac.com has some very good info
and Dr. Peter Green’s book is good….I can tell you more if you want.
Just be cautious and use your brain about most websites on the internet.
I see some strange stuff that makes me want to scream “BS!”.
Yes there was blood in my stool, I had made an appointment with a doctor to get it checked out but by the time I got there it had stopped thankfully. We think it was from my husband being away for a week and me having to feed the cats – I don’t normally and their food is full of gluten, we might have to switch that! Got another appointment in a few days so I’ll have the opportunity to bring it up again if I need to. Hopefully not.
Thank you very much for the recommendations on products and reading, I agree about the strange stuff on the ‘net! It is amazing how much contradictory and outdated information there is out there too.
My intestines bleed with ibuprofen use.
I learned that the use of NSAIDS in people with colitis (which I also have) is contra-indicated. . . and I learned this in the book “the Angry Gut” by a Canadian doctor (whose name escapes me). When I was on prednisone I was having some things I thought were side-effects and the doctors I went to say, ‘oh, no way’ and then I read a book . .. by a Canadian doctor, that said these are the side effects of prednisone . . . and listed out a LOT and I had three of them that were horrible. Since, at that time, there wasn’t much for me take otherwise, I was stuck. When I finally went off Prednisone, my hair stylist could not believe how much hair I was shedding. I have naturally thick hair that, while I was on the drug, increased in thickness times three. Just imagine months and months and months of shedding hair by the handfuls. It was crazy.
Basically, I learn about my illness from medical books at the library, online, and researches on Amazon for things too. I also think that in the USA doctors often aren’t told all the issues of drugs in order to keep the drug companies happy, which was reinforced when I read two books on my primary illness that were both written by doctors in Canada.
As for other things, I try to avoid sites where there are a lot of advertisements. I figure if someone is getting paid to review something then they possibly are not going to be as trustworthy/honest as they might be otherwise.
My medical doctor told me to stick with the Mayo Clinic or Cleveland Clinic websites and to avoid webmd and other medical websites.
Right, what Irish Heart said.
I didn’t finish my thinking/writing on the blood in colon issues.
so Ibuprofen causes it for me, as does other NSAIDs, but ONLY because I already have moderate to severe ulcerative colitis.
which I should have gone to the doctor months before I did, but I put it off thinking ‘it’d go away’.
GO to a gastroenterologist–or your Primary care doctor first if ins says.
You need to have the reason for blood in your stools checked out.
It could be streaking on the waste, such as comes from hemorrhoids (which I can never spell, thank you spell check), or from something in your large intestine (colon) or your small intestine.
Seriously get it checked out ASAP. If I’d gone to a doctor even two months before I did back when I was first having issues, I’d have been better off for the last 18 years. My colon is drastically damaged, and my small intestine is too (lucky me!)
Hi Amy, thank you for your comments and concern! As I replied to IrishHeart thankfully the bleeding has stopped, but I will be getting myself to a doctor ASAP if it starts up again. I am breastfeeding so I am not on any medications at all, we actually think it was the cat food – my husband usually feeds the cats but was away for a week. Not something I will be forgetting next time!
I appreciate your blog so much. I, too, continued to experience distressing sickness even after going gluten-free after being diagnosed with celiac, 1 yr ago.
I have received help from two invaluable sources for those with digestive disorders, esp celiac and the complications of fungal candida which usually team up with gluten intolerance.
I contacted world-renowned fungal candida expert, Dr. McCombs and asked if his plan could help me. I ended up getting on his 4 mth fungal candida/whole body detox program. I was sweating 6x per week to remove toxins, drinking 2 liters of water to flush out more toxins, while taking candida force (undecenoic acid) to convert the candida fungus back to its harmless yeast form. I was also taking detox essentials to boost my immune system to get them out of my system. After the yeast was removed from my body, i replenished with good probiotics. I would’ve never been able to experience true healing from celiac damage without first removing the fungal candida.
Dr. McCombs also had me work on my digestion issues. i started taking HCL and digestive enzymes with my meals and I’m continuing on the probiotics.
Unless we break the cycle of inflammation in our gut and remove the secondary celiac reactions, we will never heal.
I urge you to check out Dr. McCombs and not only that, but Dr. Vikki Petersen who has shared the stage with leading Dr. and celiac researcher, Dr. Alessio Fassano.
Dr. Vikki Petersen has a destination clinic called, ” Health now medical.” She has a youtube channel as well to deal with the exact issues you are facing!
Dr. Vikki Petersen even mentions getting tested for cross-reactive foods which may be igniting an immune response as if you are still consuming gluten. She advises the avoidance of dairy products as they increase inflammation in the gut and created a lot of mucus which inhibits the absorption of much needed nutrients.
I’ve included links to truly beneficial information that I believe will help you. Fighting the good fight along side you,
Dr. Vikki Petersen even mentions getting tested for cross-reactive foods which may be igniting an immune response as if you are still consuming gluten. She advises the avoidance of dairy products as they increase inflammation in the gut and created a lot of mucus which inhibits the absorption of much needed nutrients.
I am like you suffering with constant sickness from my Celiac disease. I have found the book The Virgin Diet, by JJ VIrgin and it has changed my health and my outlook on what to eat. It shows you all the items that have gluten secretly lurking around in foods. It tells you to omit the 7 foods that cause people with Celiac harm.
I had no idea that some of the foods I thought were safe were actually making me sicker. Even some of the GLUTEN FREE foods were a bigger problem due to exchanging the gluten for soy or corn. I have not found a doctor yet that knows which ends is up with Celiac or how to treat it. Getting the Gluten out of your diet is expecially hard when they put it in cosmetics, shampoo, toothpaste, mouthwash and so on. Read her book it will even describe what each food does to your body and the pain you will experince.
We must stick together and educate one another.
I’m 13 and my mom has had type 1 diabetes since she was 11 and has had celiac for 5 years. I was diagnosed with celiac 4 and a 1/2 months ago and haven’t felt better at all and my Ttg levels have stayed the same and I’m still getting headaches every day and stomach aces and I’m really pale and tired all the time. But I’ve been really strict, but have been on the pill clondine for a tic that has been getting worse over this last year. It has really hurt my neck and back I fractured my jaw when I was 9 and the tic has really hurt my jaw a lot. what’s going on?!?
Hi Sammy. Try to hang in there. It can take awhile for your body to begin to heal. It took me over a year. If you don’t start to feel any better within a few months, go back to your doc and see what’s going on. Hang in there.
I was diagnosed about 2 years ago at the age of 61. I have been sick all my life.
I am also not healing very well. I guess it might be too late. My gut is so inflamed.
Here are two things I have learned recently about why adult celiacs do not heal well:
1. Most gluten-free products are not gluten free. They are allowed to have 20ppm which is too much for most celiacs. They do not have to list gluten on their packages if there is only a “trace”. Hain’s Dream beverages make many celiacs very sick for this reason. They not only have 20ppm of gluten, they actually use barley syrup as their starter. They say they then take it out! Yea, right…
Gluten-free manufacturers also put in milk products, inulin, or soy which is also a problem for many celiacs (I am allergic to soy and milk). Inulin is harsh on celiac tummies, acting like a laxative (Pamela’s bread has inulin). Sugar, particularly sorbitol and mannitol are also harsh on our tummies.
The only products I can tolerate are unsweetened almond milk from Blue Diamond ( the vanilla and chocolate have trace amounts of gluten), the Sea Salt (low sodium) almond crackers from the same company, the Betty Crocker chocolate chip cookie mix, and GF Pantry’s french bread mix (the sandwich bread mix has milk). Hormel and Boar’s Head sandwich meats are both gluten free. That’s it. Everything else has to be fresh.
Stay away from milk products.
Stay away from soy.
The coconut milk products are too high in fat and upset most celiacs’ tummies. We do not absorb high amounts of fat.
Use only egg whites…the egg yolk is too high in fat.
No fried foods.
I make my own ice cream using the almond milk and an ice cream maker.
2. Although, we absolutely must eliminate all gluten, the gluten-free diet does not heal most adults. Here is a website that explains why. He gives links to studies by Mayo Clinic, etc. that shows why we are not healing. The information is enlightening. (He is selling a special diet plan — but I did not buy it. I will not purchase anyone’s diet plan.) He is basically leaving out all grains and most oils.
I hope this helps some of you understand why you are not healing.
I forgot to address a couple of products that work.
Most margarines have gluten in them. Smart Balance is okay if you can tolerate milk derivatives (casein and whey). I cannot, so I am using Earth Balance “original”. It has a small amount of pea protein — which I am slightly allergic to — but no gluten or milk. I do not have bad reactions to a small amount of pea protein. Casein, on the other hand, sends my tummy into fits.
Secondly, for the Betty Crocker gluten-free cookie and brownie mixes, I do not use oil or butter. I put in one individual serving of Motts natural applesauce, 2 egg whites substituted for one egg (4 egg whites for 2 eggs), and I add a little water until the batter is the right consistency. I use a tiny amount of Crisco to grease a non-stick pan.
I eat mostly chicken and fish — an occasional serving of prime rib as a treat — hormone free. I buy fish that has not been grown or processed in China because they use hormones and antibiotics.
But, as I said, I am still very sick. The older you are when diagnosed, the less chance you have of healing because your small intestine has been too greatly damaged.
And the world of “gluten-free” prepackaged foods is not a safe world for us. For example: Rice Dream made me very sick because of the hidden barley in it. So do not depend on prepackaged “gluten-free” foods.
The worst part of Point Break- I grew up and vacationed within less than 150m of the beach in question, and even lived near it again recently… And it’s not in a part of Aus that would remotely get a “hurricane” (read cyclone for us)
The weather can be weird but not cyclonic.
I now live way, way north of there- in the tropics- and we get cyclones but not waves because of the great barrier ref. Enough to make your determined surfer cry.
We only get decent waves in a cyclone.. And they’re not surfing quality.
What ya gunna do?
Having the same problem. Trying the GAPS diet, CBD oil and soothing supplements.