Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

How To Approach Doctor With Celiac Concern?

Curlyqueen

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. catnapt
      - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      highly unlikely NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean...
    2. cristiana
      - cristiana replied to hjayne19's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      21

      Insomnia help

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep. One of my relatives is an insomniac and I am sure that is part of the problem. Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read,...
    3. SilkieFairy
      - SilkieFairy replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      It could be a fructan intolerance? How do you do with dates? https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    4. Lkg5
      - Lkg5 replied to Matthias's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Unexpected gluten exposure risk from cultivated mushrooms

      Thank’s for addressing the issue of mushrooms. I was under the impression that only wild mushrooms were gluten-free. Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative. In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken. Major mistake!
    5. catnapt
      - catnapt posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      results from 13 day gluten challenge - does this mean I can't have celiac?

      my IGG is 815 IGA 203 but tTG-Iga is <0.4!!!!!!!!!!!!! oh my god- 13 days of agony and the test is negative? I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has I am...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748
    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      highly unlikely  NOTHING and I mean NOTHING else has ever caused me these kinds of symptoms I have no problem with dates, they are a large part of my diet In fact, I eat a very high fiber, very high vegetable and bean diet and have for many years now. It's considered a whole foods plant based or plant forward diet (I do now eat some lean ground turkey but not much) I was off dairy for years but recently had to add back plain yogurt to meet calcium needs that I am not allowed to get from supplements (I have not had any problem with the yogurt)   I eat almost no processed foods. I don't eat out. almost everything I eat, I cook myself I am going to keep a food diary but to be honest, I already know that it's wheat products and also barley that are the problem, which is why I gradually stopped eating and buying them. When I was eating them, like back in early 2024, when I was in the middle of moving and ate out (always had bread or toast or rolls or a sub or pizza) I felt terrible but at that time was so busy and exhausted that I never stopped to think it was the food. Once I was in my new place, I continued to have bread from time to time and had such horrible joint pain that I was preparing for 2 total knee replacements as well as one hip! The surgery could not go forward as I was (and still am) actively losing calcium from my bones. That problem has yet to be properly diagnosed and treated   anyway over time I realized that I felt better when I stopped eating bread. Back at least 3 yrs ago I noticed that regular pasta made me sick so I switched to brown rice pasta and even though it costs a lot more, I really like it.   so gradually I just stopped buying and eating foods with gluten. I stopped getting raisin bran when I was constipated because it made me bloated and it didn't help the constipation any more (used to be a sure bet that it would in the past)   I made cookies and brownies using beans and rolled oats and dates and tahini and I LOVE them and have zero issues eating those I eat 1 or more cans of beans per day easily can eat a pound of broccoli - no problem! Brussels sprouts the same thing.   so yeh it's bread and related foods that are clearly the problem  there is zero doubt in my mind    
    • cristiana
      Insomnia help

      By cristiana · Posted

      Thank you for your post, @nanny marley It is interesting what you say about 'It's OK not to sleep'. Worrying about sleeping only makes it much harder to sleep.  One of my relatives is an insomniac and I am sure that is part of the problem.  Whereas I once had a neighbour who, if she couldn't sleep, would simply get up again, make a cup of tea, read, do a sudoku or some other small task, and then go back to bed when she felt sleepy again.  I can't think it did her any harm - she lived  well into her nineties. Last week I decided to try a Floradix Magnesium supplement which seems to be helping me to sleep better.  It is a liquid magnesium supplement, so easy to take.  It is gluten free (unlike the Floradix iron supplement).  Might be worth a try.        
    • SilkieFairy
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By SilkieFairy · Posted

      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Unexpected gluten exposure risk from cultivated mushrooms

      By Lkg5 · Posted

      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      results from 13 day gluten challenge - does this mean I can't have celiac?

      By catnapt · Posted

      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.