• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just Got Back From A Doctor Who Knew!
0

7 posts in this topic

After over a year of doctors and specalists I met a doctor who actually said the words celiac!! After describing my symptoms he said its highly likely and that my body is in over reaction mode,given my possible celiac and other allergies (dust mites).My systemic response to gluten right now is 1: muscle tension jaw/neck/shoulders 2: cold extremities 3: heart rate elevated 4: fatigued 5: sinus flares .Then over a course of a few days to a week the symptoms decrease (if I don't eat gluten) and I start healing slowly .Any infiltration of gluten and it restarts,the longer I take between gluten ingestion the less the symptoms will hit if I do consume a small amount. He said I may also have adrenal fatigue? Because its been a year solid of non stop symptoms plus all my regular allergies (dust mites/pollen) amplified 10fold.So my body is exhausted hence why coffee affects me negatively.He said once the adrenal fatigue is fine coffee can come back into diet no problem.He also said I could consume gluten and come back for official tests but I just can't take another beating like that on my body I need rest badly.Thank you Xmas snacks for that !!!! Anyways does this make sense to some of you? He did take the usual thyroid/ blood cell tests and also a cortisol test to check adrenal functions.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


That's great you found a doc who "gets" you! Sounds like you know you can't eat gluten.... like me, there is NO way I can eat enough gluten to go for a biopsy, and luckily my doc also said my strong reaction and a few other signs and tests were good enough for him.

My next step is going to be testing for nutritional deficiencies, will you be doing that too?

0

Share this post


Link to post
Share on other sites

He did that today all b12 ,zinc iron magnesium etc although I already heavily boost myself daily I'm curious to see the results

0

Share this post


Link to post
Share on other sites

So the doctor didn't order blood tests? It's a really quick blod darw that any lab could do... If you want to check if it's celiac (vs Non-celiac gluten intolerance - which has the same symptoms but not the intestinal damage) you should request the blood tests and do them in the next day or two before the gluten really starts to clear from your body.

The most common tests are:

ttg IgA and IgG

total serum IgA

EMA IgA

DGP IgG and IgA

Did he check your TPO Ab, Free T4 and Free T3's as well as your TSH? TSH doesn't always tell the whole story, and thyroid problems are common with adrenal fatigue.

I am glad you have a doctor who is willing to look at the current thinking about these issues; many docs won't admit adrenal fatigue exists and think you can only have celiac if your gut hurts and you get malnourished and skinny. Sounds like a good one. :) Best wishes with the gluten-free diet (after you are satisfied with any testing, or lack there of that is).

0

Share this post


Link to post
Share on other sites

Very nice that you found a doctor that looked at the puzzle and suggested Celiac Disease - this warms my heart.

I agree with Nicole - get all the blood tests before removing gluten - this data may become very valuable to you.

0

Share this post


Link to post
Share on other sites
Ads by Google:


It had been almost two weeks since I ate gluten he didn't want to waste my money on a test,he gave me two options 1: go eat gluten for at least two weeks snd come back to test or try gluten diet .He also said my symptoms match up to s milk allergy as well (not intolrence,but allergy).Im not sure which is worse celiac or milk allergy? I had a gluten intolrencr test done this summer but it came back neg (not celiac test).And I was eating gluten everyday before that test. He did do thyroid test ,cortisol test,vitamin deficiency test on Wednesday and iron test, so I'm waiting for those results

0

Share this post


Link to post
Share on other sites

If gluten is making you ill and you cannot tolerate consuming for testing -- I still think the Celiac panel has value -- better now than when you have been gluten-free for longer.

Many folks question the need to remove gluten as time passes - this is why I think it important to get tested if at all possible. You may be negative, may be possitive, but the longer you are gluten-free you will definitely test negative.

Edited by GottaSki
0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,797
    • Total Posts
      932,506
  • Member Statistics

    • Total Members
      64,282
    • Most Online
      3,093

    Newest Member
    lyoncallies
    Joined
  • Popular Now

  • Topics

  • Posts

    • Certainly seems likely if those levels dropped due to gluten removal. I am just curious, when you had the scope eventually, were you eating it?  Are you feeling any better? 
    • 1. Double checked your antibodies? 2. Those of us with celiac have issues with some nutrients for various reasons, being either we can not absorb enough of them from our foods due to damage to intestines or the new gluten-free foods you changed to are non fortified and do not contain the nutrients you which is especially true if you eat a bunch of processed gluten-free foods. A combination of both of these can lead to extreme fatigues. I found taking Magnesium, and B-Vtitamin supplementation helps (Liquid Health Stress & Energy along with Neurological support same company, Liquid version is easy to absorb and no pills). Look into KAL Nutritional Yeast also, I use it to make condiment cheese sauces, toppings, blend it with egg whites. it contains many nutrients we are lacking and is a great supplement/food to have in your diet. 3, Look into what cycling lady mentioned, this could also be a issues. 4. Had your blood sugar checked?
    • I'm going to play Captain NCGS to Posterboy's Professor Pellagra (No doubt the Marvel and DC Cinematic Universes will soon be bidding for our services) and say that regardless of the blood test results, this: is exhibit one. You have a reaction to the gluten free diet. That doesn't necessarily eliminate fodmaps or issues with other components of wheat, but it's at least suggestive and the main reason I think you need to get back on it and give it a longer go. In fact, as I hinted at in the previous post, I'd be doing my 'goodbye gluten' top 10 croissant and bagel bucket list because I don't think you should go back to it simply based on exhibit one. It's messing with you in a way that it shouldn't. I had sciatic back pain for 20 years which I attributed to a disk injury. It was left sided and when bad travelled down my left leg following the sciatic nerve. I had all the scans, treatments, exercises etc. Nothing really worked and it was at times intensely debilitating.  Drum roll... Gluten free diet cured it. My new theory is that gluten related inflammation was localised in that area and it caused the pressure on the nerve. Now why there and not elsewhere? No idea, but it could be inflammation causing your pain? I went for several diabetes tests because I would suddenly become very weak, hungry and I would feel unwell. Weak, hot, light headed, on the verge of passing out. The tests were normal but I knew that I seemingly had a blood sugar issue. Another win for the gluten-free diet.  It sorted the tremors in my hand (begone thoughts of early onset parkinsons or ms) and the nerve twitching under my eye and etc etc. well you get the point. I've said above I sometimes wonder if I'm undiagnosed celiac but there are certain aspects of NCGS which seem to fit me and maybe you too. My digestion stomach etc is much better now but I wouldn't have said before all this that it was particularly bad. I read this http://www.bmj.com/content/345/bmj.e7982 and I have a similar experience that neuro symptoms were more apparent than digestive in the 'classic celiac' model. (more of that sort of thing here though I already sent you the Umberto Volta I think. I would be fascinated if you, your brother and myself were to do the gluten challenge and then take this test: http://www.medicaldaily.com/non-celiac-gluten-insensitivity-blood-test-392850 what the result would be. But you know what, unless the scientists put out a call for more volunteers I won't be doing it. In the search for answers, validation, certainty, it's easy to forget the real goal, feeling better. After several years on the gluten-free diet I feel better. I'm no longer thinking that the next bout of chest pain will be my last minutes on earth. I no longer worry about going blind because half my vision has gone grey, I'm not trembling, I don't have cardiac arrythmia, I don't have rheumatic pain, I don't have crippling back ache like I'm 40 years older, I don't get  faint, dizzy and heart pounding when I stand up,  I don't have brain fog, anxiety, depression (well sometimes!), painful stomach cramps, weird white tongue, rashes on my torso, horrible greasy skin on face, horrible dry peeling scalp, sores on my scalp and neck, white spots on my fingernails, I'm not sweating so much I have to douse myself in antiperspirant, I don't have all this and more and I don't have a letter from a doctor saying I have celiac and I don't give a **** about it. I don't have gluten and as the Godfather of soul would say...  I feel good  Feel good IT. You've done as much as anyone could to find an answer. Maybe there's one around the corner or maybe there'll be one in 5 or 10 years when the likes of Marios Hadjivassiliou, Umberto Volta or Alessio Fassano have completed their research. Or maybe not or never. It's in the 'nice to have' than the essential's for me now. Do the diet, note your symptoms, stay connected with your doctor so that if there is anything that sticks around suggestive of other things you're on top of it, but feel good and focus on that and enjoying life.  All the best!    
    • I think he's right. It's a hard burden at times at any age but there will be particular challenges for your daughter as kids don't want to stick out or have to be continually monitoring things like their food. Check out this advert from a UK retailer. Beware it's so sugary it could probably give a diabetic person a sugar crash! Maybe you could do similar? Just get or make a selection of kid friendly foods but don't say anything about it to your daughter, just everyone go in and start filling their plates.  If she asks you if you've done anything for her you just tell her that she can eat everything on the table. At least this would show both that choice is still available to her and that because everyone is eating the same thing that she won't feel like she's being singled out?  
  • Upcoming Events