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21 Comments

  1. 1

    Gale Naylor

    You’re not crazy. We are with you. It’s possible to bake gluten- and dairy free. It may take time to learn and some experimentation, but it can be delicious. Eating homemade breads, muffins, and cookies keeps me sane. Get your kids tested.

    Reply
  2. 2

    Jenny

    I’m so so sorry this is your journey. Mine was strikingly similar. I’d been GF too long to get a definitive diagnosis, and there was no way I was going to complete a gluten challenge just to confirm what my body was already telling me. Whether I actually have celiac or not is irrelevant. I live my life like I am and, while I really really miss some foods, l’m much happier without being sick all the time. Go with what works. With time your real friends won’t think you’re a jerk, you’ll learn how to ignore the eye-rolls, and you’ll be at peace with a family that doesn’t really seem to get it.

    Reply
  3. 3

    B Smith

    My son had a similar experience. He was diagnosed with CD in October. He got worse after going gluten free. We kept a food journal and realized he was egg and dairy intolerant, but was still having symptoms. He finally has found relief after seeing a dietician who diagnosed him with leaky gut also. She put him on a functional medicine elimination diet. He is also on 6 different supplements. I cannot tell you the difference we have seen in just four weeks! I feel like I finally have my child back. Good luck and don’t give up. It took us many visits and calls to the GI, and a visit to a different dietician. Find one that specializes in GI issues.

    Reply
  4. 4

    Stephanie

    I too have a very similar story. I had already been gluten free for too long when a doctor was willing to test me. Eating gluten makes me unable to live a pain free life and so I was not willing to eat it just for a test. I had to learn that a doctor does not have all the answers sometimes, but your body always will. If you know that gluten is bad for you, then that should be the end of the story. Do what makes you healthy and happy. A friend once asked me, if you ate gluten just to take the test and it came back that the test was negative for Celiac, would you go back to eating it? The answer was no, because the physical reactions for me are too severe. That was the moment I stopped searching for the diagnosis, because it didn’t matter the results, I knew I had to change my life style no matter what. And there are so many good things to eat. Food will become enjoyable again, I promise. True friends will understand (can’t always say the same with family), and blogs like this really do help on those bad days. I hope you can find your peace, it may take time, but there is a light at the end of the tunnel.

    Reply
  5. 5

    Laura

    I had 6 years of being mis-diagnosed. Got everything from “go on birth control” to “let’s do a sleep study” to “you need to see a physcologist”. Finally got the diagnosis almost exactly 3 years ago via endoscopy. One year ago I did the FODMAP diet (and am on it permanently for now). I used to be a HUGE baker, but with GF and FODMAP (plus other things I found I can’t tolerate), nearly everything in recipes is a substitute except for sugar, salt, baking powder/soda, cocoa powder, and eggs. It’s taken a long time, but I’m finally able to bake some things that turn out ok. Good enough for me, but to a “regular” eater, it might not be as good. But, since I’m the only one eating it, my opinion is the only one that matters! LOL

    So, it does get better. You WILL learn how to bake again (give yourself some time off if you need to – that’s what I did. I took a break of a few months before diving in full-blast). Gluten Free on a Shoestring is a great starting point. I like her basic recipes.

    Reply
  6. 6

    Julie

    This person I think is my soul mate. That is exactly how I feel!!

    Reply
  7. 7

    Zizzy

    I echo many of the experiences above. I had microscopic colitis, an autoimmune disease, and was 6 months GF when doctors wanted to do an endoscopy to prove celiac. I wasn’t willing to endure the effects of a gluten challenge, so I’m “presumed celiac” according to the top celiac doc I saw, Dr Alessio Fasano. If they found something on your biopsy, but can’t call it full-blown celiac, I’m guessing it’s Marsh 1 level damage/inflammation. If you’re obviously gluten intolerant otherwise, in my opinion that’s enough to confirm celiac.

    Reply
    1. 7.1

      Jess

      I’m Jess. My blood tests came back positive (Aug. 2016). Went gf for about 3 months and felt better but still having issues with gluten in so biopsy ordered. Biopsy (Dec. 2016) showed minimal damage to sm intestine. GI surgeon did not officially diagnose me with celiac but said the findings are “suggestive” of celiac. Hmm. I’m living like I do have celiac, gluten free even though I haven’t been officially diagnosed.

      Reply
  8. 8

    NickiB

    I agree with the comment above about Doctors not knowing everything. Your body will always be giving you clues to what works for it and what doesn’t. Many people have stopped listening to their bodies and trying to find the root cause for things because more often than not, there is a pill for what ails you, and that is easier than changing your lifestyle or diet.

    I have discovered that by listening to my body and doing a little detective work, I have been able to diagnose many of our medical issues, even for our pets! I have been correct on everything, after checking with doctors, so I don’t use Doctors or vets much anymore if it is something that can be healed naturally. I know when we absolutely need a doctor, and do use them when necessary. My faith in the medical profession is not really that high, especially with having celiac disease for so long, and being diagnosed with many other things that turned out to not be the case. Many things just being chalked up to being a mother of 4, And feeling tired, or down. “Do you need an anti-depressant for that?”

    Food allergies and brain fog are part of the deal with celiac. My two youngest have also been diagnosed, and my littlest one, who is 3, has also developed a sensitivity to dairy, tomatoes, citrus, and sulfites. When she has these things, she breaks out in hives or a rash where they have touched her skin. She also has eczema. (I blame the sulfites and dairy on my husband! It can’t all come from me!! But seriously, he has asthma and sulfite sensitivity.) As you can imagine, cooking has become interesting, trying to figure out meals and treats that everyone can eat because I refuse to make 3 different meals for everyone each time I cook. It is expensive and time consuming. We all try and be supportive of each other and not eat something someone else cannot have in front of them.

    Even after being gf for quite awhile, I find myself searching for words or trying to remember something so basic… like right now it has taken me several minutes to remember the words “auto immune disease.” No joke. They were there, but out of reach. I used to have an excellent memory! Try and have a sense of humor; it will go a long way.

    Keep your head up, try and think positive thoughts. I know it’s easier said than done, but so many have been through the same and more.

    You will have good days and you will have bad days. Try not to dwell on the bad. Think of all the things you have to he thankful for. Even if it is just the fact that you have a roof over your head. So many others in the world are much worse off… sometimes that’s the only thing I can think of to keep myself positive and out of the blues.

    Play uplifting music, watch a funny movie…read a positive book.

    Research will become your best friend. I love researching things. It makes me feel like I have a purpose sometimes, even if only for a moment.

    If your family is unsupportive, surround yourself with people who are, and people who have been there. Hopefully they will come around, but if not, you will be able to find those who can sympathize with you, especially here.

    Sorry this is so long. I feel for you, as does everyone here. Try and stay positive. Listen to your body. You don’t need a doctor’s opinion for it all… they call it “practicing medicine” for a reason, and that is because they don’t have all the answers all the time… something that is so obvious to us, doesn’t always register with them because they aren’t experiencing it themselves.

    A great food blog I subscribe to where no recipe has failed me is gluten free gigi .com. She has celiac and multiple food sensitivities including dairy. Many of her recipes include how to make it dairy free, soy free, nut free, etc. She has been a godsend on being able to feel “normal” and making good food and treats that are also (mostly) good for you.

    I wish you luck and quick healing on your journey. Lots of positive thoughts your way.

    Reply
  9. 9

    Betsy in Michigan

    I wanted to know if there was a celiac risk in my family (for my kids), especially b/c my mom had “IBS” and fibromyalgia for years before dying of colon cancer at 72 (even though she’d had regular colonoscopies). My new gastro guy says it’s not worth eating gluten (been off it for 5 years) to test myself if it makes me so sick (couple times I’ve been accidentally glutened I felt like vomiting, and I’m not a vomiter. I imagine a whole piece of bread might make me, though). So I may have celiac, but if not, I am clearly gluten intolerant (there’s starting to be more research on the latter category, if you feel the need to convince family). I also don’t do dairy, not because of gastro issues, but because its elimination has nearly eliminated MY fibromyalgia.

    You aren’t crazy, but it may take some time to figure out if you have other food issues.

    Reply
  10. 10

    Kathryn

    I think we might have the same issue (I even had the foot tingling!). My blood test was negative because I am IgA deficient (they always run that with the standard celiac test). My gastro said I would never have a positive blood test even if I had it. My endoscopy appeared normal (no villous atrophy), but the biopsy came back a few weeks later with “increased intraepithelial lymphocytes” (IELs). This is still pretty new/controversial in the gastro field it seems. My gastro said it was possible Celiac disease, and I was so thankful to finally have an answer. IELs are now thought to actively contribute to mucosal damage.
    I didn’t feel better just going gluten free (due to leaky gut and resulting food sensitivities… I was also reacting to grains, histamines, and dairy), so I did like the Gluten Dude and did the Autoimmune Protocol of the Paleo diet, and then high fat/low carb to help heal blood sugar issues. Following that diet for about a year, along with a leaky gut healing regiment and supplements to heal nutritional deficiencies, really helped with food intolerances, hormones, and my energy level.
    Bottom line, I just tell everyone I have celiac disease, even if may be gluten sensitivity or super bad leaky gut instead. That’s the only way people will respect my food choices and feel sorry for me instead of make fun of me. I have found much encouragement following like-minded eaters on instagram for food ideas and to not feel alone. Once you start feeling better and don’t react to everything so much, you will feel more confident about eating out and finding restaurants that you trust–it can be done and it is so empowering. Also, teach your family members/friends how to cook safely for you in their kitchens so you can enjoy a meal in someone else’s home.
    Sometimes I am sad about the food I miss, but I realize that I am so fortunate to know how to feel better and not further damage my body. I am in control of my health now. Wishing you much improved health in 2017!

    Reply
  11. 11

    Melinda

    My story is almost exactly like yours and like you I feel cheated as well. I get so angry that I will never know if I truly have Celiac Disease or I’m just intolerant but either case, I adhere to a strict diet.
    One recommendation I have for you which might give you a little more insight is to have a genetic test done. A positive result doesn’t always mean you have the disease but if it’s negative you will know that it’s most likely an intolerance. Good luck.

    Reply
  12. 12

    Sarah

    I have struggled with not having a definitive diagnosis as well. I’m biding my time and waiting for this test to be made available, http://www.techtimes.com/articles/88704/20150927/scientists-in-norway-develop-new-blood-test-for-celiac-disease.htm. I definitely plan to ask for it to know for sure.

    Over time, I’ve had to uncover my most significant health issues on my own. I knew I had an issue with gluten, or with wheat at least, when I went gluten-free about 4.5 years ago. The celiac blood test was negative, but my IgA was low (in the low 20’s). I had an endoscopy done 6 months later, but it was negative. It may (or may not) have been positive if it was done earlier. I hated not knowing, but I had a big revelation when I found out that my reactions were allergic. I had symptoms coming on stronger and more immediate to smaller and smaller traces. When I took an antihistamine after I noticed a reaction and got better quickly, then I knew it was an allergy. Allergists tested me for wheat allergy, but it was a low positive. However, I was highly positive to grass pollens tested. What irked me is that I had to bring the possibility of grass pollen cross-reactivity to my current allergist. Shouldn’t either of the allergists I saw have known to test me for this? Another major health issue is copper toxicity, where copper intake exceeds zinc intake, creating a zinc deficiency. When there’s not enough zinc to process copper, excess copper gets stored in organs and tissues, leading to all sorts of problems. I’ve had issues with iron for years, with this year being worse. I had more and more trouble supplementing with it to get it up. I decided to try another multivitamin to see if that might be the problem, and the new one I tried had a much higher zinc-to-copper ratio. I felt great on the multivitamin, thinking at first it was just better for iron absorption than my old one. While I was feeling better, I did have other symptoms. Concerned by the low amount of copper in the multivitamin, I began researching copper, and then I realized my symptoms were due to my body eliminating excess copper. The high zinc-to-copper ratio allowed the excess copper stored in my body to be used and eliminated. Thinking back over my dietary choices, which leaned heavily on plant-based protein and fats like tree nuts, seeds, and legumes, it made sense. When the high zinc-to-copper ratio caused me to become copper-deficient, after about a week, I switched back to my old multivitamin and started changing my diet so that my intake of copper and zinc are as balanced as possible. Again, no doctor asked about or checked my zinc or copper levels. They all just told me to get an iron supplement or take a prenatal vitamin. Thank goodness for the internet is all I have to say! Good luck to you in uncovering your health issues and getting answers.

    Also, for those wanting to know about copper toxicity, this site is a good resource, http://www.coppertoxic.com. This is a condition I had never heard of until I researched copper after the multivitamin switch, and if I had never tried that other multivitamin, I may not have ever uncovered this issue. Hopefully people will become more aware of this condition and how it can be treated!

    Reply
  13. 13

    Anne

    Sheep cheese and glory of all glories, sheep yogurt! The protein is different, so if you don’t tolerate casein, you may do fine with sheep products. Just check the label, some brands add cows milk. coconut milk yogurt and ice cream are mighty fine too! You will eventually find a pizza recipe that is good, not the same, but good. I miss the stringy cheese on pizza. My substitute for cheese on pizza before discovering sheep cheese (after several years) was sauerkraut. Strange but true. Read about the stages of grief, you are grieving. I am still moving through various stages and it will be 6 years for me in February.

    Reply
    1. 13.1

      Marilyn

      Anne, I too use sheep yogurt and cheese. I have also found that goats milk and cheese works for me because it also has a different protein. Recently I discovered goat mozzarella in a brick at my local store and it’s wonderfully chewy and stringy. Made a pizza this week with UDI french baguettes cut in half:). YUM

      Reply
  14. 14

    Celiac Posterboy

    Not Crazy,

    I wrote a blog post that might be of interest to you.

    It is actually part of a four part series but this will give you a good place to start.

    http://celiacposterboy.tumblr.com/post/142540627854/heartburn-in-pregnancy-why-it-occurs-and-how-to (get rid of it once the baby is born)

    Good luck on you journey,

    Celiac Posterboy

    Reply
  15. 15

    G

    I never got a real diagnosis either, and I wish I had. My family understands and takes it seriously, because they know how sick I was before I figured it out. No doctor I went to for answers ever mentioned celiac, even though I had all the symptoms. It’s why I don’t trust them. There’s no money to be made from it. Doctors want to make money, and lots of it.

    Reply
  16. 16

    Katie

    You have a diagnosis: gluten makes you sick. Don’t feel like you have to be positive for celiac disease in order for it to be real. I am lucky enough to have a fabulous doctor that after all my test came back negative told me about non-celiac gluten sensitivity. A good up to date doctor will know that it is a real condition. It just takes getting used to your new gluten free reality. But you will feel so much better it is so worth it! You’ll find restaurants that can help you. And as I learned from the Gluten Dude, sometimes at get togethers you might not have much to eat, but it’s about the company not the food. And wine is gluten free!

    Reply
  17. 17

    Anonymous

    I’m the one who wrote this and I must say… your comments are so kind and uplifting!! Thanks guys and gals! Thankful that there is a community out there :)

    Reply
  18. 18

    Anne

    I didn’t see anyone mention Dr. Alessio Fasano here. So let me give you his bio from the hospital website (and wikipedia).” He is an Italian medical doctor, pediatric gastroenterologist and researcher. He holds the W. Allan Walker Chair of Pediatrics at Harvard Medical School. Furthermore, he is Vice Chair of Basic, Translational, and Clinical Research and Division Chief of Pediatric Gastroenterology and Nutrition at the MassGeneral Hospital for Children in Boston.”

    You must read his book, GLUTEN FREEDOM. It will help you understand so much about Celiac Disease and Gluten Intolerance. Mainly, that the difference between the two is that those with Gluten Intolerance will not have the damage to the intestinal villi. If you have Celiac Disease you will have this damage and it will show up IF your doctor does the endoscopy of your upper gastrointestinal tract CORRECTLY. Other tests also have to be done CORRECTLY, and then the test results have to be read CORRECTLY. So, if you missed all the CAPS, what I’m trying to say is that Dr. Fasano himself tells us that part of the problem with getting a correct diagnosis is basically ignorance, lack of education/experience with this disease. It could also be nonchalance aka lack of concern amongst medical professionals. Everything has to be done correctly in order to get the correct diagnosis. But either way, Celiac Disease or Gluten Intolerance, it means you can’t eat gluten anymore period.

    I flew all the way to Boston to see Dr. Fasano myself after reading his book. He asked if I would do a gluten trial. Unfortunately, I get more sick than anyone I have ever heard of when my body is exposed to gluten, so there is no way on God’s green earth I will ever willingly eat gluten again in this lifetime. And that’s what I told him. When I explained how severely ill I became the last time I was glutened, he said I was one of THE most sensitive patients he had ever heard of. And this if from the top expert in this field of research! So, no, I will never have a Celiac Disease confirmation unless by some weird circumstance I get glutened. I do not eat out at restaurants ever and I am hyper-vigilant about everything I eat (incl. vitamins, spices –yes, spices can be cross-contaminated) and every single, solitary item that might come in contact with my intestines.

    But what Dr. Fasano made clear to me is that Gluten Intolerance and Celiac Disease have all the same symptoms except for that upper GI damage to the villi. You can still have brain fog, achy joints, depression, other mental illnesses, tingling hands and feet, attention deficit disorder, nausea, headaches, etc. And since they have the same symptoms (except for the villi damage) the results on your life and the actions you have to take are the same.

    Dr. Fasano did genetic testing and found that I do have the gene that predisposes me to Celiac Disease, but he could not give me an official confirmed diagnosis of Celiac Diseases without that endoscopy that would require my exposure to gluten. Which will never happen. The confirmed diagnosis is Gluten Intolerance and I have to do exactly the same things for that as I would for Celiac Disease.

    I had my doctor here in my hometown give me a doctor’s note that allows me to take my gluten free (and other allergen free) foods onto any plane, into any venue, wherever, whenever. By way of explaination, I tell people I have Celiac Disease because whether or not they’ve heard of it Gluten Intolerance induces eye-rolls (you all know why) even though it is almost exactly the same thing. I only had to use my doctor’s note once, but it helps to remove the fear that someone can take my food away leaving me stranded. It would be like taking a wheelchair away from someone who is paralyzed.

    FYI, I also began seeing a functional medicine endocrinologist because hormones dictate what happen in your body. (You’ll have to research why a function med. doc is so essential). But finding out what has happened to your body while it was being deprived of nutrients will help you on the road to true health. When you have a disease that damages your intestines, your body cannot absorb the nutrients it needs . Those nutrients are necessary to make the hormones it needs to control virtually every system in your body. That’s where the functional medicine endocrinologist steps in. My doctors are fantastic. They helped me to identify all kinds of defiencies, including hormonal and begin to address them. So now I take a lot of gluten-free, dairy-free, soy-free supplements. I have to take iron for anemia, extra vitamin D for that deficiency, drink bone broth for osteopenia (despite being a vegetarian), and take bioidentical progesterone (not the regular cancer-causing kind) among other things. So get yourself checked out. You likely have a multitude of deficiencies that will result in multiple disorders and diseases if not addressed. The sooner you do, the better. For you and for your family who depends on you.

    And, if you have read this long, long comment up to this point, let me just add that you should be eating as many fresh fruits and vegetables as possible, limiting any processed foods (stuff premade in a plant somewhere), staying away from all chemicals (like the ones in soda), artificial sweeteners/flavors/colors, etc. The cleaner you can make your diet, the better you will feel. I do not eat soy, dairy, meat, or any of the things I mentioned above. That’s what I’ve found works for me. This is after many, many years of keeping food journals and experimenting to find out what made me feel good and what made me feel bad. What makes you feel better or worse may be different.

    You might also be interested in this medical article
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/
    Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity

    The article is several years old, but I still found the research interesting.

    Hope this helps you or someone out there.

    Reply
  19. 19

    John

    I suffered for thirty years, with all sorts of visits to all sorts of specialists, and a lot of them thinking it was psychological. My GI doctor at Mayo Clinic said my story was typical: an intestinal traumatic event of some sort (mine was an 8 month long parasitic infection), then sickness for years and finally a Celiac diagnosis. The average time from the start of Celiac symptoms in adults to diagnosis is about 15 years!

    BTW, Mayo Clinic publishes a good book on the whole issue of gluten, called “Going Cluten Free.” I strongly recommend it.

    Reply

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