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Md Wants To Do Biopsy Now

jkr

By jkr
in Coping with Celiac Disease

Recommended Posts

jkr Apprentice
jkr
Posted

Hello,

I've been reading all of the posts for a while and thought I would finally share some thoughts. I had iron deficiency anemia (ferritin was 9 with & low H & H) last year and underwent the colonoscopy and upper endoscopy. I suspected celiac but the doctor really did not think so because he said I didn't have diarrhea! But I had every other symptom. Anyway, he didn't do biopsies. I told him I wanted the blood test so he ordered the TTG antibodies. This was last November. (the TTG IGA was high, 67); I work in a MD office with a lab so I got the results before him. I just started the gluten-free diet because I knew in my heart I had celiac. Well, I finally went to see him yesterday because I've had some stomach issues (burning, cramps). Now he wants to do the biopsy and of course he wants me to go back to eating gluten for six weeks. I'm so hesitant to go back to eating gluten. From reading these posts I know some of you would say forget it, the blood test is enough. I'm just on the fence about it.

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ravenwoodglass Mentor
ravenwoodglass
Posted

I can't write what I would like to about this doctor. I personally would find another GI and I would get my hands on complete records from his office and any and all procedures you had done. You may find that there were strong indications of celiac even without the biopsies as there are changes that can be seen in some of us but for him to not even take one biopsy was in mind negligent.

If you are feeling better on the diet at this point I would just continue with it. When you go to your new GI doctor if he thinks an endo is required I would consider having it done to rule out any other issues but the choice whether to go back on gluten for 6 weeks to 3 months is up to you. If your symptoms from gluten are severe I wouldn't.

Many of us do have other intolerances in addition to the gluten. Casien and soy being high on the list. For me soy was the direct cause of my continued stomach pain and my reaction to soy is very different to that from gluten. You could try eliminating soy and milk casein yourself and see what happens. Pepto bismal helps get rid of that pain immediately for me. I tryed that before using the acid blockers that my ex-GI wanted to put me on.

jkr Apprentice
jkr
Posted
  • Author

What type of foods have soy in it?

ravenwoodglass Mentor
ravenwoodglass
Posted
What type of foods have soy in it?

A lot. As with gluten you will need to read the labels. A great deal of the gluten free baked goods have soy for example. Soy is one of the 8 major allergens so it has to be on the ingedient label if it is there. The most troublesome for me was to find a margerine that was soy and casien free. I finally gave up and for a few months used Ghee, which is clarified butter or coconut oil for baking. I now use good old fashioned butter but liked the flavor of the coconut shortning so much I still use it.

mattathayde Apprentice
mattathayde
Posted

my doc told me "if gluten free is working for you then stick to it, there is no point to make you sick for a month to get a blood test that will just confirm what we already know, and the only thing its going to change is your insurance premiums"

i had gotten diagnosed by my alternative medicine doc and went gluten free before i knew about getting any blood test or biopsy but they have a snow balls chance in hell of getting me to eat gluten to just get a freaking test

-matt

mushroom Proficient
mushroom
Posted
What type of foods have soy in it?

More than you can imagine :o

You don't realize until you start looking for it. For example, it seems most gluten free baked goods contain soy (that's what rose up and bit me and made me so sensitive to it). You will find soy lecithin used as an emulsifier in many foods, like chocolate :( Now some people are able to tolerate soy lecithin; I am not one of them unfortunately. Soy also hides as hydrolized vegetable protein.; edamame beans are fresh soy beans. You will find soy bean oil in many salad dressings and soy is in most asian sauces (not just soy sauce). Once you start looking for it you will find it on almost as many labels as gluten, I'm sorry to say.But you can live without it :)

LDJofDenver Apprentice
LDJofDenver
Posted
Hello,

I've been reading all of the posts for a while and thought I would finally share some thoughts. I had iron deficiency anemia (ferritin was 9 with & low H & H) last year and underwent the colonoscopy and upper endoscopy. I suspected celiac but the doctor really did not think so because he said I didn't have diarrhea! But I had every other symptom. Anyway, he didn't do biopsies. I told him I wanted the blood test so he ordered the TTG antibodies. This was last November. (the TTG IGA was high, 67); I work in a MD office with a lab so I got the results before him. I just started the gluten-free diet because I knew in my heart I had celiac. Well, I finally went to see him yesterday because I've had some stomach issues (burning, cramps). Now he wants to do the biopsy and of course he wants me to go back to eating gluten for six weeks. I'm so hesitant to go back to eating gluten. From reading these posts I know some of you would say forget it, the blood test is enough. I'm just on the fence about it.

I'd also consider a different G.I. doc. And you may not have to go back on gluten for the endoscopic small bowel biopsy. I don't know how old you are, but I was 56 when diagnosed and everything doesn't heal in a couple of months (more like a year, possibly more when diagnosed later in life).

My GI doc thought there'd still be plenty of evidence of it, even after 7 months eating gluten free. She was right, biopsies confirmed the celiac and just now starting to showing signs of regrowth of villi, in response to gluten free diet. If you have a good GI, they'll know what is best.

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jkr Apprentice
jkr
Posted
  • Author
I'd also consider a different G.I. doc. And you may not have to go back on gluten for the endoscopic small bowel biopsy. I don't know how old you are, but I was 56 when diagnosed and everything doesn't heal in a couple of months (more like a year, possibly more when diagnosed later in life).

My GI doc thought there'd still be plenty of evidence of it, even after 7 months eating gluten free. She was right, biopsies confirmed the celiac and just now starting to showing signs of regrowth of villi, in response to gluten free diet. If you have a good GI, they'll know what is best.

Thanks for the info. I haven't been gluten free for as long as you were. I will be 50 next week and I'm sure I've had this since I was a child.

LDJofDenver Apprentice
LDJofDenver
Posted
Thanks for the info. I haven't been gluten free for as long as you were. I will be 50 next week and I'm sure I've had this since I was a child.

I'm sure mine was there throughout childhood as well . Sounds like we're in the same boat (lots of celiacs in our boat!).

My GI doc also had ordered blood work (re-test) at the 6 month mark, and even that wasn't normal yet. And I'm careful (not to say I haven't been occasionally glutened accidentally during that time). My levels had gone down, but still are not normal. She said it takes a while, especially given my age at diagnosis (that again), and to keep doing what I'm doing, it was going in the right direction. Initially when she said she wanted to do the endoscopy I told her there was no way I could go back on gluten, it whams me so violently now whenever it sneaks into something I've eaten. And, as I said before, she said I didn't have to. That I wouldn't be healed in this short a period of time (sure wasn't!).

Do you have a local Celiac Group of some sort? THings like that often also have links to GI docs in your area that specialize in (or at least have a high knowledge level of) celiac disease.

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