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How To Approach Doctor With Celiac Concern?

Curlyqueen

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Curlyqueen Rookie
Curlyqueen
Posted

I expressed my concern about celiac disease with my new doctor but she didn't seem interested however she agreed to send me to get a tTG blood test. How do you handle doctors who don't understand or are less knowledgeable on celiac disease?

Background: I'm currently waiting on a tTG blood test result from my new primary care physician. I have two primary care physicians because I moved for school. My original primary care doctor is in NYC and my new doctor is in Rhode Island. I have been dealing with Anemia for almost 2 years now. At first it was getting better then it got worst. I can't seem to keep my b12 levels up. its to the point I'm doing weekly injections myself and its still low. I can tell that its low because when I sleep I get tingling in my arms and I'm fatigued. Due to the low b12 I get migraines however, they aren't as bad as they use to be. My doctors can't seem to figure out whats wrong with me. I don't want to insult them but I think its celiac disease or gluten sensitivity. I have a lot of the symptoms( I didn't mention them all here) and they seem to be getting worst. To top it off I have an extreme alcohol intolerance. Maybe its not extreme but I can not drink alcohol and i use to be able to drink alcohol. I had a low tolerance but I could enjoy a beer. Now all it takes are a couple sips and its like i get sick instantly. Its as if it goes straight into my blood. I'm 22 years old and I would like to be able to drink alcohol, have energy, and most importantly I would like to know what is wrong with me. Problem is I don't want to insult my doctors by telling them what I think they should do which is a full celiac blood panel.

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ravenwoodglass Mentor
ravenwoodglass
Posted

Don't worry about insulting your doctor, he is working for you. Go in with a list of your symptoms and simply request a full celiac panel along with a total IGA. Make sure you are eating a regular gluten filled diet until all testing for celiac is done and when that is finished do a trial of the gluten-free diet no matter what the results are. False negatives on both blood and biopsy are not uncommon so a dietary trial is always advised even if the testing is negative or inconclusive.

Curlyqueen Rookie
Curlyqueen
Posted
  • Author

Thanks! I needed that advice and wish I had did that a long time ago. I'm now starting to consider just going gluten free and see if I feel better. I would like to have an official diagnosis but it doesn't seem necessary.

  • 1 month later...
Curlyqueen Rookie
Curlyqueen
Posted
  • Author

Don't worry about insulting your doctor, he is working for you. Go in with a list of your symptoms and simply request a full celiac panel along with a total IGA. Make sure you are eating a regular gluten filled diet until all testing for celiac is done and when that is finished do a trial of the gluten-free diet no matter what the results are. False negatives on both blood and biopsy are not uncommon so a dietary trial is always advised even if the testing is negative or inconclusive.

It came back negative but within that time I went gluten free and felt a lot better. Now I'm seeing a GI because I'm convinced that I have a digestive issue of some sort if not a gluten sensitivity or intolerance. Is there a difference between intolerance and sensitivity? The genetic testing my GI did also came back negative so I'm thinking possibly gluten sensitivity. The weirdest thing happened, ever since I went gluten free my eczema which had been active for years came back out of no where and in new places. I thought going gluten free would make it go away...hhmm maybe theres an allergy I'm over looking.

Anyway thanks again for your original response it helped!

domesticactivist Collaborator
domesticactivist
Posted

If you just got rid of gluten and didn't replace it with "gluten-free" substitute stuff it could be that with the reduction of starch in your diet the candida or other bad elements in your gut flora are dying off. Die off is a good thing but can cause eczema to flare up, especially if it happens quickly. My partner's eczema flares every time we add a new probiotic food, or increase amounts too quickly.

It's also possible that you have an allergy to something new in your diet.

Or, it could be that with your immune system no longer reacting to gluten, it's all amped up and needing something to do.

Curlyqueen Rookie
Curlyqueen
Posted
  • Author

If you just got rid of gluten and didn't replace it with "gluten-free" substitute stuff it could be that with the reduction of starch in your diet the candida or other bad elements in your gut flora are dying off. Die off is a good thing but can cause eczema to flare up, especially if it happens quickly. My partner's eczema flares every time we add a new probiotic food, or increase amounts too quickly.

It's also possible that you have an allergy to something new in your diet.

Or, it could be that with your immune system no longer reacting to gluten, it's all amped up and needing something to do.

Interesting...at first when I went gluten free it was very sudden and I didn't use gluten free substitutes. Now I'm all about Udi's bread( I love it). But you brought to light something I didn't think about. I just thought that this might be a sign that gluten isn't necessarily the enemy but something else. Is this something that I should mention to my doctor? The fact that my eczema flared up after I went gluten free?

Thanks for sharing this is really something new to me. I'm going to try to do some more research on this. I appreciate the feed back.

domesticactivist Collaborator
domesticactivist
Posted

I do think it's very valuable to write up all the symptoms you've been having, whether they seem related or not. Maybe another person looking at them will have another perspective or see a pattern you have missed. Maybe just writing them out will alert YOU to a pattern! I would bring that information to my doctor.

Oh, and you could say it could be that gluten AND something else are the enemies. I felt like crap when I first went gluten free. We ended up doing the GAPS diet and I majorly improved. But now I'm doing a gluten challenge and any doubts I may have had that gluten was a primary problem for me are definitely settled.

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    • AlwaysLearning
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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