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AJ Leigh

Coping With Gluten For A Screening

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I've been pre-diagnosed with celiac by my GI. I have yet to take the blood test or the screening, but based on my extensive history of stomach issues and wrong diagnoses (IBS, fibromyalgia, extreme allergies, and sleep apnea) the doctor says he's almost 100% sure I have celiac. I am scheduled for a screening in December, but I've been on a gluten free diet for about 7 months now. The doctor told me in order to show accurate results I'll have to eat about a week's worth of gluten before the test. I am extremely nervous about this because the test falls the week after my finals. I can't be taking my British Literature final and running to the restroom every two seconds! Does anyone have any advice on how to cope with this? And what about the pain and grief of ingesting gluten deliberately for such a long period of time? I am ultra sensitive and I just know this is going to give me muscle aches, cramps, bloating, and so on!

Also, when I went gluten free for the first couple of months I felt great. I felt healthy again. No muscle pain, no more fatigue. For the most part my stomach aches cleared up. Now for the last 2 or 3 months I have just been miserable. I've had the worst stomach aches, acid like there is fire in my stomach. I am excruciatingly careful about everything I consume, and I'm almost positive that I have not been taking in gluten without knowing it (unless it is a very secret case of cross contamination). I am aware that this could be a stomach ulcer, exasperated by my gluten issues. Has anyone had a problem like this? If it's an ulcer what can I do to "calm the fire" until I can get a diagnosis in December? My primary has me on Prilosec in the morning and Zantac twice a day, and Tums as needed and sometimes I still get acidic sour stomach!

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If it feels right to you, stay off the gluten and don't get the test done. It's not worth it. My mom was on her death bed when she got diagnosed. I had a lot of the symptoms so I went on the diet with her - they went away. 10+ years later, I'm still not diagnosed, but I happily eat gluten free. I have no doubt about being celiac. Doctors like confirmation - it took me a few years to find one that didn't question me when I told him I was self diagnosed.

If it makes you feel better, go for it, but make sure it's your choice, not your doctor's.

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I'm not sure where your doctor got the idea that eating a week's worth of gluten would give an accurate test result :o Unfortunately, the standard recommendation is three to four slices of bread a day or the equivalent for a period of two to three MONTHS, which I'm sure in your situation you could not contemplate. There is absolutely no point in putting yourself through misery for just one week, finals week!! to get an almost guaranteed negative result. That is, it will be negative unless you had done so much damage to your gut that it still has not healed sufficiently to give a negative, in which case there would be no point in eating additional gluten in the first place :blink:

As for your first gluten free trial, it is not at all unusual to have other intolerances show up once gluten is removed. Many of us find additional intolerances like lactose (because the area of the gut damage is the same area that makes the enzyme to digest it), as well as soy, corn, nightshade family plants, other cereal grains and grasses. And yes, you could have h. pylori - many of our posters have had the double whammy, as well as small intestine bacterial overgrowth, Crohn's disease, etc. So the endoscopy with biopsies would be a good idea. Blut eating gluten for only one week = bad idea in my book. And for a supersensitive, eating it for 2-3 months = impossible :( You are between a rock and a hard place when it comes to testing. If you google online you will find much support for a gluten challenge period of 6-8 weeks, 2-3 months, and then practically everything in between from your doc's one week, to two weeks, or I think I read one GI even suggest a big gluten meal the night before :lol: Unfortunately, the antibodies in the blood which the blood tests are seeking take longer than that to accumulate to a sufficient level to be labeled positive, and it takes longer than that for damage to occur (or in your case perhaps recur) in your small lintestine.

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After 7 months, 1 week of gluten will not be enough. The Univ of Chicago Celiac Ct does free blood screenings every Oct. The postcard they sent me said " a regular gluten diet for 3 months before the test.". While a week of gluten might make you feel like poop, it seems that it is not enough time to make enough antibodies to show up well in a blood test.

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After 7 months, 1 week of gluten will not be enough. The Univ of Chicago Celiac Ct does free blood screenings every Oct. The postcard they sent me said " a regular gluten diet for 3 months before the test.". While a week of gluten might make you feel like poop, it seems that it is not enough time to make enough antibodies to show up well in a blood test.

I am having both a blood test (to check other things as well as gluten intolerance) which the doctor said would probably come up negative. I'm also having an endoscopy and a colonoscopy. Would a week's worth of gluten not be enough for the endoscopy? I figured my stomach lining must still be damaged if I am still feeling this sick.

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I'm not sure where your doctor got the idea that eating a week's worth of gluten would give an accurate test result :o Unfortunately, the standard recommendation is three to four slices of bread a day or the equivalent for a period of two to three MONTHS, which I'm sure in your situation you could not contemplate. There is absolutely no point in putting yourself through misery for just one week, finals week!! to get an almost guaranteed negative result. That is, it will be negative unless you had done so much damage to your gut that it still has not healed sufficiently to give a negative, in which case there would be no point in eating additional gluten in the first place :blink:

As for your first gluten free trial, it is not at all unusual to have other intolerances show up once gluten is removed. Many of us find additional intolerances like lactose (because the area of the gut damage is the same area that makes the enzyme to digest it), as well as soy, corn, nightshade family plants, other cereal grains and grasses. And yes, you could have h. pylori - many of our posters have had the double whammy, as well as small intestine bacterial overgrowth, Crohn's disease, etc. So the endoscopy with biopsies would be a good idea. Blut eating gluten for only one week = bad idea in my book. And for a supersensitive, eating it for 2-3 months = impossible :( You are between a rock and a hard place when it comes to testing. If you google online you will find much support for a gluten challenge period of 6-8 weeks, 2-3 months, and then practically everything in between from your doc's one week, to two weeks, or I think I read one GI even suggest a big gluten meal the night before :lol: Unfortunately, the antibodies in the blood which the blood tests are seeking take longer than that to accumulate to a sufficient level to be labeled positive, and it takes longer than that for damage to occur (or in your case perhaps recur) in your small lintestine.

Well I definitely know that I am lactose intolerant >__<! I learned that the hard way when I was about 13 :3. As far as nightshades... I try really hard to stay away from them (but I love potatoes :((!!) because they do not sit well. I'm allergic to most of them, and the ones I'm not allergic to give me muscle aches, fatigue, and exacerbate my acidic stomach pains. I'm a little afraid I may have some other food allergies (I've been tested for allergies 3 times). I have ENOUGH food allergies as it is! I wouldn't be able to eat anything with another food allergy!

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I am having both a blood test (to check other things as well as gluten intolerance) which the doctor said would probably come up negative. I'm also having an endoscopy and a colonoscopy. Would a week's worth of gluten not be enough for the endoscopy? I figured my stomach lining must still be damaged if I am still feeling this sick.

See my previous post :)

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I'm afraid your doctor doesn't really understand Celiac. He wil do an endoscopy, taking 3 tiny samples from 16 feet of intestines. Even if you have damage left, what are the odds he will get those spots. Or what he gets will be barely damaged as it is healing or was healed and the 1 week started damage.

Also, I wouldn't do it during finals week.

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See my previous post :)

Oh, yep I just saw that. I really am a little stressed for what to do. I need to have the colonoscopy done because I have a gut feeling (no pun intended) that there could be more going on there than just a gluten thing. I may as well have the endoscopy biopsy done at the same time. But like you guys have said, who knows if one week is going to make a difference? Why make myself miserable for a week if there's a big possibility the test will turn up negative? Maybe I should get a second opinion before I do this. It's so hard to find doctors that agree on (or know about) celiac disease issues.

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Well I definitely know that I am lactose intolerant >__<! I learned that the hard way when I was about 13 :3. As far as nightshades... I try really hard to stay away from them (but I love potatoes :((!!) because they do not sit well. I'm allergic to most of them, and the ones I'm not allergic to give me muscle aches, fatigue, and exacerbate my acidic stomach pains. I'm a little afraid I may have some other food allergies (I've been tested for allergies 3 times). I have ENOUGH food allergies as it is! I wouldn't be able to eat anything with another food allergy!

Yes, nightshades are great aggravators of inflammation in the body, and I used to love my potatoes too :( But I have learned to love yams and sweet potatoes and parsnips just as much. Parsnip concannon is better than potato concannon :D Goodness knows there are enough things that I don't eat, but I still eat a pretty varied diet. By the way, an allergy is different from an intolerance or sensitivity. Food allergies are the kinds of reactions that give you anaphylaxis and are tested for looking of IgE antibodies. Sensitivities and intolerances usually do not show up very well on testing - the best testing is trial and error, although some people swear by the ELISA testing. I was told I should not eat eggs but they have never once bothered me. But the skin prick testing years ago showed mild sensitivity to corn and soy which turned into a pretty major sensitivity.

Gluten sensitivity is an autoimmune response where the body's immune system attacks itself, thinking that incompletely digested food particles in the blood stream are foreign invaders and sending the immune soldiers out to fight a war :D Depending on which food particles make their way into your blood streatm in this partially digested state a sufficient number of times, these seem to be the foods you become intolerant of. And as we limit our diets because of things we do not tolerate, it becomes more important to do a rotational diet so we don't eat too much of any one thing.

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