Celiac Rant: Gluten-Free and I Still Feel Like Crap

I totally feel your pain! It was about the 6 month mark after being diagnosed with Celiac Disease that I realized – CRAP – I am not feeling better, in fact I seem to be worsening.
I chucked all the processed crap and dove feet first into an AutoImmune Paleo Protocol (with the guidance of my functional MD) and have been seeing amazing results. 12 weeks into it, and really listening to my body, my GI symptoms, etc.
I had an appt with a GI specializing in Celiac Disease (which of course was a 4 mo wait), and I just cancelled it. Figured he wasn’t going to tell me anything I really wanted to hear!
Hang in there…….

After I was diagnosed with celiac disease and went gluten free I only felt better for a month or so. I began to have worse symptoms than I started with and lost a scary amount of weight. I was finally diagnosed with something called Collagenous colitis or microscopic colitis (same thing, just another name for it) it’s another autoimmune disease that is associated with celiac disease. You could possibly have something else going on like I did. Or just poorly healing intestines?

So sorry you are still feeling horrible, I too am still struggling to heal after my CD diagnosis. Seeing a naturalopath physician(NMD) has helped me, she put me on supplements that I need due deficency. She did extensive blood work so she knew what I was lacking. I did have to pay out of pocket though. I am finally feeling better, it’s been 2 yrs.
good luck !!

You are among friends…We’ve been where you are and can tell you that there is hope and healing ahead.

After 5 months GF, I had cross reactivity testing done. Having a Celiac “leaky gut”, other foods caused my body to react just as if I had eaten gluten. Like many others, I have cut out soy, corn, dairy, etc. The final piece was cutting out dairy…it has only been a few weeks, but what a difference!

If you haven’t read it, please pick up Jennifer’s Way by Jennifer Espoito.

Wishing healing and peace.

Please check out
theceliacmd.com
Dr Amy Burkhart is a celiac specialist in Napa CA. Whose own celiac diagnosis led her to change her course of study & practice. Two of her children also have celiac disease. Don’t know what I would have done without her early in my daughter’s diagnosis. GI docs were not helpful at all. Dr Burkhart does phone consults and many travel to see her (who doesn’t want to visit wine country?).
Best of luck to you. We wish you well!

Try adding probiotics. My daughter takes 100b a day. It will help heal the gut. Good luck!

My heart goes out to you! Yours is, unfortunately, such a familiar story. It took me a full two years to even begin to feel better and now, another full year later, I am just starting to believe that I will eventually recover fully enough to resume a “normal” life.
Years of undiagnosed Celiac disease leads to leaky gut syndrome, multiple food intolerances, and severe nutritional deficiencies. It can take years to heal even under the best of circumstances. I agree with the others who suggest that you see a functional medicine doctor. You must be tested for additional food intolerances – I bet that you will be blown away by the results. In the meantime I think seeing a nutritionist, holistic if possible, and taking vitamin injections would be helpful. Given that Celiac is an autoimmune disease that gives rise to other autoimmune conditions an autoimmune protocol, or paleo type, diet will likely be suggested. Until the leaky gut is healed a rotation diet is also important so that you don’t develop new intolerances to foods you commonly eat.
As far as the travel goes, it’s a challenge, but with some planning and practice is totally doable! My gluten intolerant husband also travels extensively and I have recently begun joining him again. I learned the hard way that I only eat at a “gluten free” restaurant if it has been endorsed as safe by 3 Celiacs. Sometimes that means eating at the same place every time, but I don’t get sick! I also learned that you can’t always depend on a safe restaurant, so I usually just go prepared to feed myself every meal. I combine my mindset from camping with a hotel stay and it works very well. I take a little suitcase with an electric frypan, a few supplies and plan a simple but wholesome menu that includes picnic style items you can take for lunch. Hotels will provide a fridge free of charge for medical conditions. If driving I pack a cooler with pre-prepared items, if flying I hit the local WholeFoods Market for perishables. I won’t go into the menu details here but feel free to contact me if you’d like some joykate65@icloud.com
The final piece for me in beginning my recovery was stress management. I didn’t realize for a long time how stress, and my reaction to it, made my autoimmune conditions flare up. Obviously you can’t hit the spa for the next couple of years to heal, but there is help to address this issue too. For me developing a practice of meditation has helped greatly; others may find cognitive behavioural therapy helpful.
Best of luck to you, there’s a huge community here to help you along the way so take advantage of it!

Have you read Jennifer Esposito’s book? I found a lot of inspiration from it. Basically, she’s telling us to take charge of our health and find a doc who understands CD. (At least that’s what I got from it.) I felt great for 6 months and the last couple have been rough. About 30% of Celiacs do not feel better and it’s due to something else being wrong. Some examples are other food intolerances that have now arisen, leaky gut syndrome, new auto immune diseases, etc. I cannot find one doctor where I live who understands CD in the way we need them to. So I have an appt with Dr. Green at Columbia Univ Celiac Center. I know it’s going to cost, but I went 30 years probably with this disease damaging my body. I want to get answers I can trust and believe. For peace of mind if nothing else. Good luck.

I’m 3 years post-dx, and have only had a few extended moments of feeling as though my regular symptoms have abated (one that lasted about 2 weeks, longest yet(!), just seemed to end the other day, why I can’t figure out) . Little by little, sometimes abrubtly, sometimes gradually, I’ve made major changes to my diet and eating habits. Some changes I’ve yet to make completely, largely because I don’t actually know if they’ll help…and they’re major, impactful changes that could bring on weight loss (which brings on mobility issues, and a variety of other bad things). Like eliminating red meat, and fatty meat. My logic (or is it my impish inner self) tells me that I need all the foods I can eat (for weight), and eliminating the occasional steak for dinner or burger for lunch would have an impact. This assumes a constant awareness of rotational variety, to keep me sane and dietarily placated. IMO, that matters, a lot.

After moving, bread is an issue again, and even though I don’t have much of it (maybe 4 slices a week), those tuna sandwiches suffer without it. Lunch is the hardest. Seems like there’s no time for it, and the options are fewest of all the meals (the way I like to eat, anyway). I have the (processed) chicken tenders a few times a week, and I know it’s not ideal. Certified GF perhaps, but loaded with “junk” ingredients. But it’s meat, it’s convenient…and it’s a risk assessment and rationalization. I usually have cooked peas with it, a low risk, frozen (not salted), bagged version. Frozen peas are a good snack food. And microwave popcorn is too, if you trust it. Good tasting that is, but not nearly as nice as the peas, nutritionally (but at least there are only a few ingredients). I don’t trust it completely, but my weight stays on much better with it included in my diet. Same for the almonds. Peanuts and cashews bother me, but almonds don’t seem to unless I eat too many. This perplexed my naturopathic doctor, who classified nuts together as one.

Another big change I made was eating constantly, and I do mean very frequently, but…not too much at once. The not too much at once part is threatened at dinner sometimes (especially after a light or missing lunch), and most notably after dinner, when the popcorn alone isn’t always enough. I’ve started with raisins (a “nibbling” type food), but they seem to have side effects. But eating regularly keeps up my energy and I think my mental capabilities as well, and also keeps my emotions stable.

I have lots of fruit (& vegetables) too, at all times of day. Okay…long story, but in short, there are still a couple of things to work out. I knowingly eat bananas even though they seem to go right through me. I knowingly eat red meat, even though eliminating it would be a good experiment. I knowingly eat late in the day before bed even though I know I don’t sleep as well doing so…in my defense on this one, weight loss seems the worst thing to deal with of all. Potatoes are a necessity, as rice doesn’t seem to agree with me (this also perplexed my naturopath). I lean toward the sweet type, but prefer the white ones, specifically the little ones). But how good are potatoes for me?

Gluten is long gone supposedly, but yet, were the occasional prepared cut fruit offerings I would get at the market contaminated? It took me until this year to test that theory. I’m glad I did, but don’t know for sure if that in particular has contributed to my feeling better recently (like Alexis said above, maybe it’s a combo of the overall effort). I do know that the goat’s milk helps me be able to have cereal. Why was milk a tough one to solve? Because when I told doctors I was lactose intolerant, they doubted me. They doubted any milk allergy also, as did I for some (maybe irrational) reason, so I’ve been wishy-washy on the food. But cereal with milk gave me the tight, full stomach symptom, very uncomfortable & an appetite killer. I blamed it on Chex for the most part. But lo & behold, the switch to goat’s milk and I can eat cereal (Chex too) with it with no subsequent symptom.

Perhaps a (much) more pro-active approach could have sped things up, but…I have always though I was pretty pro-active with my efforts in general. There is just a mountain to climb with regard to all we need to consider with these dietary and behavioral changes. Climb the mountain first, and it may take years…then check out the view from the summit. For anyone that has actually done this, walked up a mountain that is, you’ll know that there are a few false summits along the way, where you think “there it is”, but around the bend there’s just more climbing to do.

I’m guessing that years 3-5 & beyond are those around the bend years, where healing is happening, but there’s more work, more fine tuning to do. Some version of a positive outlook is definitely a good thing. Not being afraid or overly hesitant to try bold moves is also helpful. And frankly, I’d lean heavily toward trying things on our own rather than leaning heavily toward doing what paid consultants tell us to do. They (seem to) often avoid bold moves like the plague.

Be well, be safe, be glad. You live in the beautiful NW surrounded by hoards of local foods that will give you every opportunity to eat fresh and safely. It is a blessing to have a diagnosis and starting point to help start the healing process. I was misdiagnosed from
age 7 and did not catch it until age 44, in my third year of RN training and school at OHSU. I have found that my naturopathic doctor has been the best in treating my symptoms and getting my supplements on the right track.
Probiotic Lactobacillus GG is a very important part of healing and studies world wide have shown that it reverses even the most stubborn infections, even antibiotic resistant strains. Vitamin D deficiency is also very common for Pacific NW Celiacs.

The biggest struggle that I have is feeling alone with this disease.
This blog has changed my life, educated me on safety and
empowered my healing. I am 2 years into healing and I know that I will be many more years before my body is strong again.
I wish you all the best in your continued recovery.

YOU ARE NOT ALONE! That’s # 1. So many of us heard the same thing – “you will be great once off gluten” NOT TRUE. There are SO MANY other factors.
1- Be patient with yourself and forget about feeling better. You will feel a different “better”; remember this is an autoimmune disease and it changes and shifts at will
2- other food allergies; dairy should be eliminated as well as soy- both cause inflammation that you do not need
3- you should absolutely be on vit D and a great probiotic
4- any vitamins should be a liquid or powder- so you can actually absorb them!
5- get to doc who will LISTEN and test your blood with an IGG blood test. This test shows allergies that take place IN THE GUT! Demand it.
6- check your thyroid !
7- stay as clean with your eating as possible- lean meats and fish, veg and fruits.
8- get my book Jennifer’s Way, there are so many other items I want to put here but don’t want to take up Gluten DUdes entire page
9- tell people who don’t understand to back off. You need to heal and stress is one of the biggest reasons people stay unwell!

Hope this helps
Jennifer

I can’t understand why anyone would be nutritionally deficient just because of traveling. A little advance planning and you can bring food with you, hit up a grocery store or find places that offer safe Gf dining. Unless people are traveling to remote places, there’s always food to be found. I have never had a problem traveling and eating well.
Lima bean offered some good suggestions (above)

As for suddenly developing DH well after a celiac DX, this is not very common, and according to celiac researchers, theoretically, the only reason that happens is if you are actively ingesting gluten. (nothing to do with topical products whatsoever) those antibodies only rise from INGESTION.

I hate to point that out, but I always go for the most obvious reason first. So you’re getting it in big enough doses somewhere. .

I hope you can figure this out.

My celiac doc never said “just go GF and you’ll be fine”. He didn’t have to say anything anyway; I knew full well my recovery was going to take years.

He said “you’ve been sick for a long time. You’ll have to be patient. Every year is a healing year.”

He’s right.

I had been having symptoms for over 25 years, almost died from malnutrition, lost 60 pounds. After another daily bout with “the runs” I was done. Went to a clinic spilled my guts (almost literally) to the doctor. Next day was having a colonoscopy (sp) they thought cancer, did have to have a polyp removed in two stages. The gastro doc wanted and endoscopic just to check things out. Come to find out 98% of my villi was either totally dead or nearly there. His words to me were “You know what this means, right?” Yeah Lean Meat and green vegetables. So I asked about gluten free foods recipes etc. I have found that I still react to GF food a lot of the time.
With medication that is more expensive than my car payment and using GF food only once a week or so I do ok. They also found that I have antibiotic resistant H-Pylori, after 5 treatments, I was done. Even medicine has gluten in it, be very, very careful
I know this is a restrictive diet but am finally (by trial and error) figuring out how to eat.
I had dental surgery last week and the numbing agent they used had gluten. Some people just don’t listen or care. My mother-in-law still tries to slip flour or whatever in just to see if I will react.
Hope this helps some.

so much good advice–keep looking until you get answers. A good nutritionist or natureopath is worth a try. For me, I was severely Vitamin D deficient at the time of my diagnosis, once I got on supplements that helped a lot, as did probiotics. I’d have a full bloodwork done to see if you have vitamin deficiencies that can be addressed. That may especially be a problem if you are eating a very limited diet, as you indicate. As far as the work thing, I travel a lot and can get quite a bit of variety with just a Whole Foods and a mini refrigerator. It is extra work, though, and it sounds like you are worn out. The lack of sleep alone may account for your brain fog. So sorry and I hope you find some answers.

I completely understand!

When I was first diagnosised I was a college recruiter. So, on road and changing hotels daily! What a nightmare for a newly diagnosed celiac!

First, I took extra effort to pack a cooler of food. Since I was driving to most locations, this was not an issue. Since I had control over which hotel to stay at, I only made reservations at hotels with a refrigerator AND a microwave. While I was very very scared to eat out while traveling, eventually I learned to do research on potential restaurants before my trip. It’s a good idea to know where you can eat before heading out on a recruitment trip. Often, this would require calling head to make sure there was at least one item on the menu I could safely eat.

One last thing, I agree with the folks who have implied you may be responding to other food items making you feel bad. For me, before being dignosised it was dairy. I notice, now that I’ve recovered, I can handle most dairy foods. I would suggest trying an elimination diet, see how you feel, and re-introduce common trouble food items (dairy, corn, etc) to see how you react. Or if you just feel better without (corn, dairy, etc) just keep doing what makes you feel healthy. Finally, hopefully you Dr. has checked your vitamin levels. I had to take iron supplements for a year and vitamin D for several months to get to normal levels. Hopefully you have a plan to get back to healthy nutritional levels. I say yes to vitamin supplementals especially in your recovery phase.

I wish you the best recovery. Time is what you need and recovery time is different for everyone

Wendy

Just my two cents: a Cambodian M.D. trained as an acupuncturist treated me for liver and kidney damage issues; that is the only thing that cured my celiac related insomnia for good.

On the first topic of executive dinners. I’ve found that calling places ahead helps a lot. While traveling, do your research. See if the area has a GF group page on Facebook. I know we have one in our area and we do get requests from out of towners who are looking for a safe place to eat..

Keep in mind that your body is a complex system. Celiac may not be your only problem. Many of my symptoms went away, but not all.

It also sucks, but at some point you will get glutened. It will suck, but you’ll get through it. A lot of people swear by probiotics, enzyme pills, and drinking a lot of water.

I have been gluten free for 2 years. Before i went gf i studied A LOT.
1.. Get your nutrition right. This will make a huge improvement but u may still not feel tip top
2. Check out supplements &or your vitamin levels. I took vitamin d ,fish oil & glutamine also multivitamin protein shakes. If your intestines are not healing ur not absorbing most of tge vitamins u need.
3. There r 21 other foods that can trigger the same reaction as gluten in the intestines ….i can not tolerate tapioca ,soy or dairy …you may b sensitive to one of these or all.
4. Testing testing testing will drive u nuts seeing all these crap doctors ..doctors dont understand your pain or frustration. Do what is in your control 1st. Atleast u will have peace of mind u did all YOU can do
5. Lack of vitamins causes problems with your nervous system …mostly anxiety &brain fog. Ur not a freak we all have it to some degree if we have intestinal damage. Stress makes the damage worse in turn making you more anxious. ….its a vicious cycle.
My symptoms ….gastro pain , bouts of constipation &dh my whole life. A horrible pregnancy at age 33 that resulted in a healthy yet still born baby at 38 weeks. Developing probs with my gums . Extreme anxiety ….its not fun

Response to Angry Celiac:

I feel your pain! But it sounds to me as if what you need is what I needed — to accept that having Celiac may mean taking extra-care of yourself, slowing down, and demanding provision for your needs.

YOU need good nutrition. Your job doesn’t, and won’t provide it if you don’t. Neither will the world.

Processed foods, and food prepped by restaurants, can be unsafe — or rather lacking in nutritional necessity. Celiac Disease treatment is do-able, but it’s often a matter of flexibility, and lifestyle change.

I take responsibility for cooking for myself; resting enough; getting adequate calories and micronutrients. Sometimes I feel bloody resentful at the universe at large because “I have to do” extra. But in the long-run, that’s a matter of perspective.

I get to be my own advocate, recover, and make my own health a priority. I would hope I could choose that even if I hadn’t got Celiac. But Celiac has clearly made it a necessity.

Take care of you; demand what you need; and be willing to make the changes in your own life so that you can thrive, not just survive; recover; not just malinger.

Good luck, and all my sympathy!

CJ
Tumbling Gluten Free (http://tumblingglutenfree.blogspot.com)

I’m surprised none of you mentioned the nightshade reaction… Some people with celiac are also very sensitive to tomatoes, eggplant, potatoes, and peppers – all nightshades. I also recently found out these foods are high in glutamic acid, which is the natural form of MSG. The migraine component points toward nightshades and MSG for me. I cannot eat eggplant and watch how much of the others I consume. And of course no MSG.

You are definitely not alone! I am 3 years post diagnosis and I still feel awful a lot of the time. Sorry. I wish I could be more encouraging. You have probably have many foods that you are reacting to. Many of us have multiple food allergies/intolerances due to going years and years undiagnosed.. CD causes a lot damage that does not change over night. it will take time to heal. I am doing better than I was 3 years ago but I still have my bad days, bad weeks , bad months.. In addition to gluten free, I had to go dairy, soy, legume, peanut, tree nut, grain and night shades free before I began to improve at all. I started on the Paleo diet and began taking a boat load of vitamins. I felt great- for a while.. Then suddenly everything I ate was making me sick. I ruled out all possible sources of cross contamination .. I was being beyond careful, but it seemed my body was become allergic to food all together. That is when I found out I have leaky gut syndrome. After some research I found the GAPS diet- It is solely designed to heal and seal the damaged ‘gut’. A diet that can last anywhere from 2-5 years depending on how extensive the damage is. I have been doing this for a year.. or a modified version of it. GAPS works, I have seen great improvements but it is a very difficult plan to stick to.. and like I said before healing is not instant- it takes time. I still have a ways to go. We have to be patient. I have now gone back and doing GAPS intro again for the second time in hopes to speed up the healing process. Don’t give up hope.. from what i have heard form other Celiacs it gets better the longer you are on this journey. Celiac disease changes your life completely but it doesn’t have to ruin your life. I still go out to eat but only to a select few restaurants that I know I can trust. Family get togethers /putlucks,birthday parties, BBQ’s are the trickiest things with CD. You want to go and join in but you can’t because of the threat of cross contamination or people that don’t understand CD. I have just learned we take our own food- PERIOD. Unless the people completely get CD then I don’t eat their food. I don’t make an issue of it.. I go and enjoy. I just don’t eat anything. It is only a big deal if we make it a big deal. I always take enough to share with everyone but it is so me and the kids have safe food to enjoy. We stress to family and friends we would love to come and spend time with you but we have to bring our own food because we have so many food allergies. Please don’t be offended. We just have to be really careful or we will get very sick. If that is ok then we would be glad to come. Most people are very understanding if you are just honest with them about how serious CD is. Good luck. I hope you find a rhythm and learn to manage it in a way that fits into your work.