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Gluten Challenge (After Being Gluten Free For 2 Years)
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Hello, I was previously diagnosed with celiac disease based on mild indicators on blood tests. My doctor asked me to immediately start the diet since I wasn't absorbing any of the food I was eating and he did not want to risk it. I was severely underweight. Anyway, I went to a gastroenterologist this year who requested, begged, that I get the biopsy done just to make sure I was properly diagnosed. Well, I started the "gluten rich" diet the day he asked me to, three weeks ago, for a February 25th biopsy. I'm 22 years old, teaching full time, so it's sort of a strain sometimes. Well, I started the diet the same day I started my period (it was regulated, on birth control). I'm severely anemic so I was on birth control to regulate and shorten my period, but after I started the diet, I thought my period really exaggerated itself. I was convinced I was on my period for the entire time, but I stopped bleeding last night and wasn't bleeding when I woke up this morning. After a bowel movement this morning, my "period" seemed to have returned. I realized it was coming from somewhere on my backside (can't specify because I don't know). There is no pain but I bleed all day, like it's a period. It's not heavy at all, and at most, it fills, altogether, one regular pad after a day. At first I just thought it was my period giving me a normal complication (I often have had problems with it), but I stopped the birth control because I thought that was contributing, and I realized it was rectal bleeding. It's not painful at all, but I'm a bit concerned. It had been two years since I'd consumed even the smallest bit of gluten, and now I've been bleeding from my rectum/eating gluten for three weeks! I called my GI but he's closed so he's going to see me Tuesday. What could this be? My BMs are not painful, I don't strain at all, I really have no pain, the only pain I ever have is after consuming milk or wheat, a stomach ache, but nothing during the BM. Could it be hemorrhoids? Could it be something else? I'm just really frustrated and want to stop eating gluten...now.

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I'm a little confused about that doc. If you are well healed, why is he asking you to hurt yourself and cause damage? Just because he makes a good profit on endos and colonoscopies, doesn't make it right. His oath says something like " Do no harm".

Would you say to a well controlled diabetic, " your blood sugars have been stable for years on insulin. Let's take you off. Eat all the sugar/ carbs you want until you go into a diabetic coma. Then we will know we are on the right treatment."

Time to get a new GI.

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I'm a little confused about that doc. If you are well healed, why is he asking you to hurt yourself and cause damage? Just because he makes a good profit on endos and colonoscopies, doesn't make it right. His oath says something like " Do no harm".

Would you say to a well controlled diabetic, " your blood sugars have been stable for years on insulin. Let's take you off. Eat all the sugar/ carbs you want until you go into a diabetic coma. Then we will know we are on the right treatment."

Time to get a new GI.

He wants to diagnose via biopsy, so he's asking me to do it again. A pain, a really big pain.

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I think I'd tell him exactly what he could do with that scope!

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He wants to diagnose via biopsy, so he's asking me to do it again. A pain, a really big pain.

Three weeks on gluten is likely not long enough for a postive biopsy after you have been healed for as long as you have. You would need to continue on gluten for at least 3 months. There is no reason, other than to line the doctors pockets, for you to continue the challenge now that you are clearly reacting. Your in pain, your bleeding. That is a good reason to stop the challenge now. The challenge is positive and you don't have to prove anything to this doctor.

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Three weeks on gluten is likely not long enough for a postive biopsy after you have been healed for as long as you have. You would need to continue on gluten for at least 3 months. There is no reason, other than to line the doctors pockets, for you to continue the challenge now that you are clearly reacting. Your in pain, your bleeding. Your challenge is positive and you don't have to prove anything to this doctor.

Exactly!

He wants to biopsy you? So what! I want to slap him! Should I? No. Just cause needless suffering and pain.

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I would be going to the hospital for that mate. rectal bleeding can be dangerous.

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    • I think the idea of grinding your own at home stems from the thought that flavored coffees might be ground on the same machines.  The grinders in the grocery are not cleaned between uses.  However, I have not found a flavored coffee bean that had gluten, so it's probably not a real concern.  For coffee that comes from a factory ground, I wouldn't worry at all.   Machines would be cleaned between flavors and nothing but coffee could be made on the machines or even in the same building ( everything made would taste/ smell like coffee). if you still have doubts - I went to the International Celiac Disease Symposium a few years back.  This is held every few years in different countries for medical professionals that study and treat Celiac.  They present research, etc.  All food served was gluten-free.  We drank a lot of plain, already ground, coffee!  A lot!   Coffee is not on any lists as a gluten containing food.  Talking legitimate organizations - not some blogger or pseudo- science website.   After all this, if you still doubt that coffee is gluten free...... Then don't drink it!  It leaves more for me!    
    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
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