• Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
Liquidceliac

Just Got Back From A Doctor Who Knew!

Rate this topic

Recommended Posts

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.

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?

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).

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.

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

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

Share this post


Link to post
Share on other sites


Ads by Google:


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
      108,390
    • Total Posts
      941,015
  • Member Statistics

    • Total Members
      66,402
    • Most Online
      3,093

    Newest Member
    Audrey’s Mom
    Joined
  • Popular Now

  • Topics

  • Posts

    • Welcome!  Here is more information about a gluten challenge: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ I would personally go for the maximum amount of tine and would consume as much gluten as I could tolerate 1 to 2 slices a day.  Why?  Researchers really do not know who builds antibodies fast.  Some can do it in as few as a few weeks and others take much longer.  Where do you fit?  You do not know, so considering the maximum recommendation.   Do not be horrified about your doctor googling.  That is an excellent sign, in my opinion.  My neighbor is an ER doctor.  He googles all the time and combining that with his vast medical training and work experience, allows him to quickly help patients.    There is no way a doctor can know everything about disease and treatment.   I wish you well!  
    • I have not found any that are reasonable (a gluten-free kit is available on Amazon and they want  $50 ).  Either you make the GINGERBREAD walls from scratch (gluten free)  or just use cardboard as a base and “glue”  on gluten-free gram crackers or “stucco” (fondant)  with frosting or   We never eat the end product; however, the kids consume plenty of decorations while it is assembled.  I would not recommend handling a gluten gingerbread house.  It is too crumbly and the risk for cross contamination is great.  So, make a gluten free version or create a new holiday tradition.  
    • My daughter who is 9 and newly diagnosed went on a secret gluten binge about a month ago.  I had her gluten free cupcakes in a package next to the gluten containing cupcakes.  She decided to test it out and ate 3 or 4 mini gluten filled cupcakes in about 10 minutes.   She ended up super sick and threw up a few times.  It was a good learning experience for her.  She now turns down cupcakes at parties.   I am Room Mom for her class this year and bring both gluten free and store bought for the class.
    • Looks like you tested negative on the celiac blood tests.  Who ordered the tests?  Reticulin has not been used for more than a decade.   This makes me think that your doctor may not be so celiac-savvy.  Why does that matter?  Some 10% of celiacs are seronegative.  If celiac disease is strongly suspected, a  GI might want to confirm with an endoscopy.   Also, you did not say how long your gluten challenge was before that last blood test.  A challenge requires a person to be on a gluten diet for 8 to 12 weeks: http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Do you have any risk factors, like family history, another autoimmune disorder, IBS?   https://www.mayoclinic.org/diseases-conditions/celiac-disease/symptoms-causes/syc-20352220 It seems like the Gluten Free diet is helping your current symptoms of joint pain and rashes.  So, then you would be considered Non-Celiac Gluten Sensitive/Intolerant.  That diagnosis is done when celiac disease has been ruled out.  I can see why he recommended the gluten free diet.  You felt better!   You are going to have to decide if pursuing a celiac disease diagnosis is necessary for you.  I wish you well.    
    • Anyone kbow if aleve or Advil is safe to take for gluten free?
  • Upcoming Events