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Appt With Gi On Jan 30


xcraigx

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xcraigx Rookie

So, last time I posted on this board I was unsure of where to proceed with my suspicions. I've since seen my general practitioner who did blood work and said I came back for positive gliadin. She was quite non chalant about it and said that I have an intolerance to gluten and should just avoid "doughy foods." I couldn't believe how generic that response was but anyways... I asked her if I should see a GI and she said they'll just tell you the same thing.

Well one look around this board and I knew this was strange advice so I spoke to a family friend who is a doctor and she said emphatically that its important for me to see a GI because a blood test is not enough.

My questions:

1. Should I continue eating a gluten diet until I see the GI?

2. What is the difference between Celiac and gluten intolerance. Can gluten intolerant people handle small amounts or something?

Thanks for all your help everyone.


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Rachel--24 Collaborator
1. Should I continue eating a gluten diet until I see the GI?

2. What is the difference between Celiac and gluten intolerance. Can gluten intolerant people handle small amounts or something?

1. Yes, you should remain on a normal diet before seeing the GI. You should be eating gluten daily for about 3 months prior to tests.

2. There isnt much of a difference as far as symptoms go and there is no difference as far as the treatment. You would still have to be gluten-free for life. It would not be a good idea in either case to eat small amounts of gluten. You will not find villi damage w/out Celiac Disease though. Although intolerance causes damage it does not cause villi damage...so that is specific to Celiac.

hollyd Apprentice
So, last time I posted on this board I was unsure of where to proceed with my suspicions. I've since seen my general practitioner who did blood work and said I came back for positive gliadin. She was quite non chalant about it and said that I have an intolerance to gluten and should just avoid "doughy foods." I couldn't believe how generic that response was but anyways... I asked her if I should see a GI and she said they'll just tell you the same thing.

Well one look around this board and I knew this was strange advice so I spoke to a family friend who is a doctor and she said emphatically that its important for me to see a GI because a blood test is not enough.

My questions:

1. Should I continue eating a gluten diet until I see the GI?

2. What is the difference between Celiac and gluten intolerance. Can gluten intolerant people handle small amounts or something?

Thanks for all your help everyone.

I am awaiting diagnosis by endoscopy. I am now seeing a celiac specialist and researcher. This specialist has told me that I need to eat 4 servings of glutenous food per day for 2 weeks prior to my test to make sure an accurate result is achieved. That is in addition to eating gluten as I have normally been doing. I just wanted to pass that on.

All the best to you.

Holly

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    • trents
      If you have been eating the gluten equivalent of 4-6 slices of wheat bread daily for say, 4 weeks, I think a repeat blood test would be valid.
    • englishbunny
      it did include Total Immunoglobin A which was 135, and said to be in normal range. when i did the blood test in January I would say I was on a "light' gluten diet, but def not gluten free.  I didn't have any clue about the celiac thing then.  Since then I have been eating a tonne of gluten for the purpose of the endoscopy....so I'm debating just getting my blood test redone right away to see if it has changed so I'm not waiting another month...
    • trents
      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
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