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Gluten Challenge (After Being Gluten Free For 2 Years)


nutbutters

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nutbutters Rookie

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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kareng Grand Master

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.

nutbutters Rookie

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.

sa1937 Community Regular

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

ravenwoodglass Mentor

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.

kareng Grand Master

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.

beebs Enthusiast

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


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    • GlorietaKaro
      Thank you— yes, valid and essential— The issue either doctors is that every one I have tried to talk to about this has essentially rolled their eyes and dismissed me as a hypochondriac, which gets discouraging. I believe a diagnosis would help me to be taken seriously by doctors as well as being validating, but can carry on without it.    There are many, probably most people in my area of my age and gender, who avoid gluten, but many just avoid it casually— eating the occasional plate of wheat pasta or a delicious-looking dessert, or baking cookies with wheat flour for gatherings.  That is not an option for me. I don’t eat other people’s cooking or go to restaurants that do not have strict cross- contamination procedures. It can be boring and lonely, and people do look at me as if I am being a bit dramatic but weeks of symptoms after a single small exposure has taught me to respect my experience.    Thank you very much for your response— sometimes I just need to hear that I am not crazy—
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      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
    • Ello
      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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