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26 Comments

  1. 1

    Nancy

    I’ve been there — both in the horrendous physical condition before cutting out gluten and in the position of later wondering whether doing a gluten challenge and getting an endoscopy would be worth it. (The celiac panel I took after I had already been GF for a couple of months was negative.) When I asked my doctor for his opinion, he said very seriously, “I would not want to see you make yourself that sick again.” So maybe I have celiac, and maybe I have a condition that looks just like it, but the uncertainty means that I have to live and eat exactly the same way I would if I had a gold-plated diagnosis of celiac.

    I’ve been living GF for seven years and totally understand the ways in which not having an official diagnosis and wearing the scarlet C can make life more complicated. I used to take pains to explain my situation to everyone, including restaurant servers, but I’ve come to realize that many of them don’t understand celiac/NCGS the way we do (because they don’t have to!) and that they group customers who request GF food into two categories: 1) Officially Celiac and 2) Full of Shit. As a result, I’ve also come to realize that there is nothing morally wrong with telling them that I have celiac, since to them that’s the only acceptable synonym for “medical condition that means you absolutely cannot tolerate gluten” and since that’s the only way I stand even a remote chance of not getting violently ill from the food they serve me.

    With or without a definitive diagnosis, your first obligation is to protect your own health. Do whatever that takes.

    Reply
    1. 1.1

      Meridith

      I love your phrasing “gold plated diagnosis of celiac”! It often seems true; however, lately I’ve been telling servers I have a “gluten allergy” so that they take me more seriously. The terminology is like a moving target! For that reason, I don’t think she should suffer to get the diagnosis. This is a very real reaction and not in her head. Her doctor(s) should understand her situation enough that they would provide a note for that music festival or things of that nature—if not, maybe she needs a new doctor with more empathy.

      Reply
    2. 1.2

      Joana Azevedo

      Nancy,
      I am Portuguese, and I am in the same situation as you,word by word… It’s a big dilema… But now I also do the same… I need to say that I am Celiac in order to be taken seriously…
      Even the cross contamination is hell for me… that afect all my body imediatly.. even ataxia…

      Reply
    3. 1.3

      John

      My approach is to tell servers that I have a “gluten allergy.” It seems to always work. The key is that food service workers are scared, properly of allergies, and if you tell them you have a food allergy, they take you seriously. The fact that CF is not allergy (and NCGS isn’t either) is beside the point. It works.

      Reply
      1. 1.3.1

        Paula-momof8

        I do the same thing in a restaurant. I say gluten and dairy allergy as opposed to gluten intolerant or celiac disease because allergy is a buzzword and they tend to take you more seriously. Is that deceptive ? NO I don’t think so. Because whatever you call it glutens going to make me very very ill and I need them to take it as seriously as they would an allergy.

        Reply
  2. 2

    Joanna

    you can cut back on the amount you are eating – but make sure the doctor knows what is happening to you during the challenge, and Non Celiac Gluten Sensitivity is real – that may be where you end up. But nope, it is not all in your head even if you are not Celiac. Trust me on this :) Good luck, you can get through this, and I think it is better to know. After all, you have come this far. Hopefully the tests are scheduled as I doubt you want to do this one minute longer than you have to.

    Reply
  3. 3

    Paula-momof8

    I want to say I absolutely agree with the Dude .. You are NOT imagining this. It is not all in your head. Listen to your body on this one.. it is shouting at you. It is such a personal decision to get tested after you have gone gluten free. Personally, I would not do it because my reactions are so severe to being exposed to even a little gluten .. It’s awful ! Some of the symptoms are projectile vomiting, the BIG D, horrible migraines, cramps and stomach pain, bloating ,chills, body aches, dizziness.. just to name a few. The only way I can accurately describe it is like this.. imagine having the worst case of food poisoning, the worst case of the flu and the worst hang over you have ever had, all at the same time… and that is from accidental exposure. Full on eating gluten on purpose would probably land me in the ER. I am in the ‘not officially diagnosed by a doctor” camp as well. I stumbled upon gluten free not to treat celiac disease but to heal from severe adrenal gland fatigue. Once I went gluten free I felt better than I had in years and every time I did try some gluten after that my reactions got more and more severe each time. That told me all I needed to know. That I can’t eat gluten for the rest of my life. There was no going back. However, there is no doubt in my mind at all that I have celiac disease. But I am not saying don’t get tested if you feel the need to do so. I wish I could offer some words of wisdom for this awful time til you find out for sure.. Except a hang in there.. I know it sounds feeble and lame.. But hang in there.. Even if it comes back negative. Don’t lose heart. Do what you know you need to do for your own well being, which is be gluten free. Now I will say that I have 8 children ranging in ages from 24 to 8. All but one of the younger kids began to experience the same symptoms I have to gluten because we were making gluten free meals. It was too hard to make two separate meals and have separate food.. I kept getting sick from cross contamination so we went gluten free as a family and our home is gluten free
    . On the occasion they have had gluten they have gotten very ill. My older son was already moved out on his own by this time so he never went gluten free like the rest of us. I have strongly suggested that he go get tested NOW while he is still on gluten because he has a lot of the tell-tale signs of Celiacs.. but he won’t listen to Momma. (24 years old and he thinks he is grown up or something and can make his own decisions . imagine that! lol) The others were never officially tested either because once we realized they needed to be gluten free as well.. like me, there was no going back. I don’t feel the need at this point to put them through the pain of having re-introduce gluten in order to get a diagnosis. I wish you the best of luck as you pursue an official diagnosis. I hope you get the answers you are looking for.

    Reply
    1. 3.1

      Ruth

      Thank you so much for your response. It was confirmation that I don’t need to get tested, I’m not crazy and it is highly likely at least one of my children is experiencing the same thing. God bless you for your encouragement!

      Reply
  4. 4

    Cyndi Ivy

    I have never heard of a months long gluten challenge (I thought they were two weeks with a small amount of gluten each day), and I can’t even imagine the suffering you must be going through right now. For me, it isn’t worth it. There is a company out there offering a blood panel that you do at home, and it doesn’t require that you consume gluten in order for them to see the antibodies. They have a panel of board certified physicians reviewing and interpreting the test results. If that is possible, whether or not some random group of people has determined a “gold standard” through having a portion of your already damaged small intestine torn out, then the rest is unnecessary (my opinion only). My health and longevity are the two most important things to me, with the health and longevity of others with celiac hovering not far below that. Each of us has to determine what is important in our own lives, and make decisions based on that, and on our lifestyle.

    I will offer this as advice, which I know some don’t appreciate. Take food based gluten free supplements during your challenge: L-Lysine, and Vitamin D3 for your immune system, Glutenza or another digestive enzyme targeted at gluten proteins, Vitamin A, a good B Complex, Vitamin C. In addition, keep activated charcoal and gluten aid handy. Neither is perfect, but in combination, they will help with the symptoms. They won’t get rid of them completely and they won’t stop the damage (nothing can) but you won’t feel like you’re dying. All you can do is keep your body as strong as possible and that means boosting your immune system – which is what the D3, L-Lysine, etc. will all do. The gluten challenge immediately throws you into no immunity, and malnutrition. The supplements won’t fix it or stop it, but they will at least be a good barrier until this is over.

    I wish you luck, and a little relief from your pain. I hope you get the answers you need.

    Reply
    1. 4.1

      Karen

      What is the name of this company? Would like to let my daughter know.

      Reply
  5. 5

    SB

    The challenge with a gene or iG test won’t change your life from what you’re doing right now. The DNA test may clue your family and children into their needs. It’s more expensive, so your doctor may not be allowed to tell you about it. But, you can request it.

    The iG test is pretty bogus, IMHO. It gives a lot of false negatives and false confidence.

    Reply
    1. 5.1

      Rebecca

      You can also order a celiac genetic test online for about $100.

      Reply
  6. 6

    Rebecca

    I may or may not have celiac, but I’ll say I do if I’m in that, “Do you *really* have gluten issues?” situation, and without any guilt. I’ll also ask my doctor for a note if I ever need one. For me, when gluten-related issues started during/after the birth of my 5th child, I went to the doctor several times over the course of a year, and after he offered to increase my antidepressant (jackass), I insisted on full testing: thyroid, CBC, celiac. I discovered I had Hashimoto’s with antibodies off the charts, and the gluten antibodies were “inconclusive” – i.e., registered on the test, but not high enough for an official positive. I also later found out about a number of nutrient deficiencies, five cavities in one visit, etc. etc. All classic celiac stuff.

    I was also having swallowing issues, which didn’t clear up when I cut gluten, so when I went in for an upper endoscopy, I asked for a celiac biopsy at the same time. I’d been off gluten about 6 months at that point, but figured the damage may still show up. Well… They forgot to do it. $800 co-pay for the procedure, and the more time passing, the more likely I’d have to actually go back on gluten to get a diagnosis. For me doing a gluten challenge was not an option. A. It will drive my Hashimoto’s through the roof, causing my body to further destroy my thyroid and increase likelihood of thyroid cancer (which my grandmother had, interestingly) (google the gluten thyroid connection if you’re curious about this – it’s been well studied, though virtually no endocrinologists recommend a GF diet for thyroid patients). And b. my main symptoms, which aren’t GI, are not ones I or those around me would be able to “endure” for eight weeks. So my window of opportunity had effectively closed.

    AND, I may well have gotten a negative celiac diagnosis. But would that mean gluten is A-OK dandy for me? Um. Absofreakinglutely not.

    So what *else* could it be? A little story: My middle son was diagnosed with EoE (eosinophilic esophagitis) shortly after my Hashi’s diagnosis. This disease is basically an attack on the lining of the esophagus, causing inflammation, trouble swallowing, etc. It’s usually caused by food allergies. For the past year and a half this poor kid has had 9 endoscopies (two included celiac tests – negative) and is confirmed allergic to dairy, egg, soy, and wheat. He *also* had severe behavioral changes on wheat. If we’d gone in looking JUST at celiac, we’d be told he was fine, wheat wasn’t an issue, it was in in our/his heads. The Eoe tests prove otherwise. That’s to say, celiac isn’t the *only* issue someone can have with gluten/wheat that can make them feel like total dung.

    Clearly the person who wrote the letter has a problem with gluten. Personally, I’d say the piece of paper isn’t worth the potentially long-lasting damage gluten is doing to the body, especially since the piece of paper is to satisfy *others* and has little real benefit for the person suffering.

    Reply
    1. 6.1

      Cortney

      Good advice, thank you. I kind of suspect that my grandma had Celiac. She had osteoporosis and RA but also had EoE which I just read can be caused by Acid Reflux which can be caused by Celiac Disease! All three of my aunts on that side and my mom have EoE. My mom just the other day had her esophagus stretched. So I thought another good reason to get diagnosed would be that it would convince my mom and aunts and sister to also get tested.

      And I think I will do the genetic test. I didn’t know it was so cheap.

      Reply
  7. 7

    Cortney

    Update from letter writer-

    Ok I emailed my doctor and told him how much I’m suffering. This was his response:

    Cortney,

    “Just go get the labs done. If you have true celiac disease they will already be positive. However it sounds like the results won’t really make a difference as it already seems you feel better when you don’t eat gluten. So it’s not like you are going to go back to eating it just because the labs are normal. Follow your gut….and get back on gluten free diet.”

    So that’s what I’ll do. If it’s negative I’ll try to convince him to give me some kind of official diagnosis that will enable me to confidently and officially say I can not eat any gluten. That’s really my main goal. To make it official. I fear that if I go to jail (not that I would….but you never know…I watch a lot of Dateline) or am hospitalized or in a situation where some institution controls all the food that they’ll see me being GF as a fad instead of medically necessary that they won’t allow me GF food and I’ll have to fend for myself.

    I can vividly see myself trading my dinner roll for green beans with cellmates Spike and Hatchet Face just so I can get enough calories. And what if trading food is prison code and I’m unwittingly asking Hatchet Face to be my prison wife?! And she makes me do things like pee in a cup so we can reserve the potty for toilet wine?! All because I didn’t get a diagnosis! See…it’s much more than just being able to rub it in the face of dickish servers. It’s avoiding a long and happy prison marriage. (It would be happy because I give great back rubs and she’d protect me from Spike. And we’d never go to bed angry.)

    Ok so no more gluten. I almost feel better already. I’ll keep you guys posted if anything new happens.
    -Cort

    Reply
    1. 7.1

      Martha K

      Thank goodness for your doctor finally helping you out, Courtney.

      I just told my latest doctor I have Celiac (I tested positive through a nutritionist 18 years ago, saliva test – I don’t know much else bout it, frankly, but it and the clear issues I have with gluten are enough) – he didn’t require anything in my records, and it is now in there- he just said, ‘Oh! OK – so we know we have auto-immune issues…” and typed it on into my record. I almost cried. For my two hip replacements 4 years ago, they had “Gluten-free meal” in their system, no problem (Except the food was dreadful. but at least gf! )

      And the truth is (Aside from the asses at a damn music festival who are too damn greedy about their concessions profit to just let people be!!) it isn’t morally wrong for you to tell waiters, etc. the you have Celiac. It is true in some form or fashion, and will make no difference to any of them if it isn’t “Official”. Having to sit and humiliate ourselves trying to convince the kitchen through the wait staff that they really should believe us, please PLEASE… sucks.

      Wishing you all the best, and immediate improvement now that you can stop eating, essentially poison. What a nightmare!

      Reply
    2. 7.2

      Tracy Dean

      Love the way your mind works! You OBVIOUSLY have to stay off of gluten, and get a doctors note to laminate and put in with your drivers license, so if you ever get tossed in the pokey, you won’t have to worry about translating prison slang to get your food.

      At least you’ve got a doctor who believes in you! Follow his/her advice, and your gut, and go back to the way of eating that makes you feel like a human.

      Good luck.

      Reply
  8. 8

    Jennifer

    I recently went through the challenge. Was horribly sick: stomach ache, bloat, constipation, headache, dizziness, sores in mouth that got so bad it felt like my teeth were loose and going to fall out, rash on arms, hair falling out, extreme fatigue. It has now been a month since I finished the challenge. I was negative for blood and biopsy. But I’m still healing. My mouth is better but I feel like I ruined my teeth. The dizziness finally went away a week or so ago. And I now feel like I’m even more sensitive to gluten than before. I feel like I wrecked my gut and health.

    And all for a negative result. It’s not worth it in my book.

    Reply
    1. 8.1

      Cortney

      Worst nightmare! Did your doctor give you any kind of diagnosis? Gluten Sensitivity at least?

      -Cortney

      Reply
  9. 9

    Elizabeth

    I was in the same boat. Both of my grandmothers had celiacs, and I had all the symptoms along with the dermatitis. My doctor said that it was a personal choice but he recommended the genetic blood test first since I was already doing so much better on a gluten free diet. The test came back positive, and he said that there was no doubt in his mind that an endoscopy would say anything different. For me, getting glutened is the equivalent of severe food poisoning. Cooking spray with wheat in it knocked me down for days. Since I have such bad reactions and I have accepted being gluten free for the rest of my life, I decided I didn’t need the endoscopy to validate what I already knew.

    Reply
  10. 10

    Lighthouse Celiac

    Has anyone tried the enterolab feces test?
    https://www.enterolab.com/

    Reply
    1. 10.1

      Hap

      Hey LH!

      I’m back to working away and haven’t been around much but I couldn’t resist giving you a “shout out” I hope all is well for you!!!

      As to the emailer’s “gluten challenge,” after the feces test, a colonoscopy, two endoscopies and receiving an official “celiac” diagnosis, my Dr told me the next protocol was a “gluten challenge” after I’d been off gluten for 3 months and feeling a bit better.

      In response to my Dr’s “challenge,” I replied “not No, but ‘H€££ No’ ”

      He grinned and replied “I figured that’d be your answer, I understand and I’m good with that.”

      That was 2013 and now after 3 types of cancer, 5 retina surgeries including a vitrectomy and the removal of a walnut sized tumor from under my tongue through my neck, all caused by gluten, I sure am glad i refused the “gluten challenge” as it’s taken almost 5 yrs for me to overcome the damage from the prolonged effort to find out that gluten was the culprit killing me.

      Two weeks ago, after a seven yr battle for my life, my annual physical Dr gave to me the “all clear” and said most folks take a fist full of pills to get “my numbers – chloresterol, a1c, psa and all of those other annual physical numbers,” which I earned with exercise, lean meats, fresh fruits and vegetables.

      Oh yeah, and last year my GI Dr said I no longer have to worry about esophageal cancer anymore, assuming he said, I stay far away from gluten, including “gluten challenges.”

      So LH, no more feces tests for me, but I’d get the first one if the doctor thinks it’s advisable. The funny experience with that particular test was my Black Lab was in the bathroom with me when I was “collecting the sample” and the look on his face was priceless – like “Dad, what in the world are you doing, and Why?!?”

      Hap

      Reply
    2. 10.2

      Cali Celiac

      I haven’t used the test, but I did do some online research. Here’s a couple of links about Enterolab stool tests:

      https://www.celiac.com/gluten-free/blogs/entry/1546-enterolab-a-scientists-viewpoint/
      http://www.cureceliacdisease.org/faq/why-dont-you-recognize-tests-stool-tests-or-otherwise-for-gluten-sensitivity-that-are-currently-available-through-companies-like-enterolab-or-cyrex/

      The articles are not recent. I had a hard time find anything scientific that’s recent about stool tests for CD. Everything I did find that was not anecdotal all said the same thing-not accurate or reliable.

      This is the most recent article I could find:
      https://www.verywell.com/enterolab-testing-may-identify-gluten-sensitivity-562956

      Seems like the science doesn’t support stool testing.

      Reply
  11. 11

    Christine

    I want to offer a negative thing that my husband had happen after the gluten challenge. I must admit in the end it answered so many questions for our family, I’m glad he endured it. Our story is very long and painful, but I will try to be brief. My oldest around age 2 started having a mouthful
    of painful sores. He would scream and it was painful for him to eat anything. Then he started to get sick almost every month and developed a painful very itch rash on his knees, elbows and bottom. The mouth ulcers ended, but over the years severe joint problems, and abdominal pain developed. One Orthopedic Dr, who treated him for extreme shoulder pain when he was 10 years old and wearing a sling, noticed his x-ray was full of horizontal lines. He said it was like my son had “been very sick his whole life and his growth had been continually stopped.”
    (He was of course! ) Eventually my son had severe fatigue, diarrhea, and continued rash. He would be bedridden for a week at a time, sitting slightly to drink pedialyte with straw, and craved salt. He missed so many days of school. In retrospect those periods where he was too ill to eat probably saved his life.
    So, typical story–years of misdiagnosis, CAT scan, few MRI’s, X-rays routine,over 10 ER visits (U of M),blood tests, genetic tests (of course never for celiac), three different rheumatologists, hospitalized for diarrhea, I could go on and on. Ended up paying out pocket for a rheumatologist Cleveland clinic. This doctor said he had Childhood Autoinflamatory Disease (rare disorder) and put him on colchicine 3 times a day for about 3 years. This drug stops all inflation in your body and really helped the joint pain and rash, but of course not the fatigue, and diarrhea. Finally sick of my emails the doctor told us to make dietary changes. Jan 2014, (age 14) removed gluten and dairy after reading they were inflammatory. As you can probably guess, my son’s problems he suffered since age 2 quickly, dramatically improved. Shocked at this, I finally read online about celiac and was certain this was the real problem. Blood tests are not possible while on colchicine, so realizing genetic component involved, I convinced family Dr to screen my husband and myself . My husband’s TtG was high and after arguing with Dr, convinced him to refer my husband to GI. (FYI, my husband was told back in college he could never donate blood because of repeatedly elevated liver enzymes, he had a rash always present on his bottom and posterior thighs, had smelly gas and winter blues, general joint pain, often taking Motrin.) Our whole family had gone gluten and dairy free at home just to help our son try the diet in 2014. My husband had been gluten free for 7 months and feeling great when finally went to GI Dr. ( Fyi, married in 1995, I used all 100 percent whole wheat bread, pasta, even ordered pizza with whole wheat crust) my husband had to return to gluten diet for gluten challenge and it was about 4 weeks before he could get in for endoscopy. The night before the procedure was scheduled my husband started to have severe stomach pains, almost went to ER. Again long story short, my husband was of course 100 percent confirmed celiac on endoscopy (called at work, told by nurse 100 percent confirmed celiac and go on gluten free diet for life). (Sooo helpful!!) My other 2 “healthy” children were screened and my daughter then six had higher TtG then her dad, and of course was later confirmed by endoscopy. (Fyi, she was also anemic and had muscle and bone loss. She was also very irritable and I thought low energy. She would ask me to go upstairs and get her things, complained a lot on long walks, etc. )
    Now, back to the original question about eating gluten for testing. In my husband’s case he was undiagnosed and had eaten huge amounts of gluten daily for almost 20 years. But, after the 7 months gluten free and then the 4 weeks of gluten challenge, he developed the severe stomach problems and pain he never suffered before. He then also had diarrhea. These new symptoms took us working diligently over a year on strict gf diet to get back to how he was prior to gluten challenge. Something to consider.

    FYI, my oldest had genetic testing because he could not have the blood testing from the colchicine med and to our utter shock and disbelief we were told he did not have the celiac genes and over 99 percent certain he could not have celiac disease. So , of course no endoscopy was performed. All his symptoms and problems resolved on strict gf diet and he grew over 4 inches and gained 16 pounds, first year on gf diet (he was in 20th percentile before from years of sickness.) We simply did not believe that he wasn’t celiac. Over a year later reading research article (which, I must admit I do almost daily)read about research done to determine the HLA genetic results of a group of confirmed celiacs with positive blood tests and endoscopy results. To my amazement, almost 5. 8 percent did not have HLA DQ2 and /or DQ8. They had HLA DQ2. 2. “Therefore, HLA DQ2. 2 should be included as an important HLA type related to CD.” Mubarak, journal pediatric Gastroenterology Nutrition., 2013 April. Human leukocyte antigen DQ2. 2 and celiac disease.
    Anyway, took me an hour to go through his huge medical record, but I knew in my heart instantly upon reading this article that my son would have this gene. I was right, my son of course had HLA DQ2. 2. His new pediatric GI Dr at U of M now says he is an “assumed celiac.” I would never put him through a gluten challenge to get endoscopy confirmation. I can’t even fathom it. All his old symptoms return with even a mild glutening and he is back on couch ill. He is very sensitive.
    God bless!

    Reply
  12. 12

    Robert

    I was diagnosed several years ago after 6 months of severe abdominal pain and several trips to the ER and hospital stays. They even took out Gall Bladder because they thought that was my problem. L.
    So I went Gluten free and was really good at it. A couple of years ago I thought I would cheat a little. So I had a cookie at work. No problem. No pain. Nothing. So I tried something else. Still nothing. After experimenting for some time I eventually would treat myself to a hamburger from time to time. Or if guy’s at work had pizza I would have a piece. This went on for a little over a year.
    Then I noticed I was losing weight. I had gained a lot of weight while on this Gluten free diet. At my worst I had gained 30 pounds. When I started to notice a weight loss, It was like 10 pounds in like 2 or 3 weeks. It worried me. I began thinking that I had started to damage my Villia to the point that I wasn’t absorbing my nutrients. So I went back on my strict diet.
    I have not been retested since my original diagnosis. I figured why bother since there isn’t a cure. I guess a mistake could have been made but…………..I know a couple of people that can’t even look at bread without a reaction. I’m not sure what to do. I would LOVE that a mistake was made in my case. Because I have only found a couple of things that I actually like that is gluten free. Togo’s GF wrap, King Auther’s GF Pancake mix, and Mt. Mikes GF pizza. Most everything else leaves a lot to be desired.

    Does anybody have any thoughts?

    Reply
  13. 13

    Paul

    I have been GF for over 25 years now. I am a self diagnosed celiac; officially, I am gluten intolerant. However, I have such extreme responses to being poisoned with gluten, plus I have too many symptoms in common with celiac, which gives me confidence that I have celiac disease. My official “gluten intolerant” diagnosis is just as sever/reactive as an official celiac diagnosis. I just lie to people and tell them I have celiac disease. It does not matter if it is true or not. What matters is if they poison me or not.

    It is extremely disappointing to me that after 25 years the medical community still sucks at diagnosing food related illnesses. I do not understand why celiac disease is treated as an exclusive club. I guess it is because the lifestyle is so great. :-( I actually believe it is driven by a profit motive.

    Obviously, I also believe the medical community should give gluten intolerance as much seriousness as a celiac diagnosis. Especially if they truly follow the first do no harm principle.

    Reply

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