• 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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Just Tested....still Don't Know What's Wrong
0

8 posts in this topic

I went to my doctor about 2 months ago. I was advised to be gluten and dairy free for a month and a half and then start eating gluten again. During that time, my symptoms were nonexistent and I felt better. But when I started eating gluten again, my symptoms returned and I felt that my previous symptoms were worse. I just had blood tests to test for allergies to wheat, milk, etc, including Tissue transglutaminase IgA. I just received the results and it seems that they are negative. Could they have come back negative because after being gluten free, I only started eating gluten for 2 1/2 weeks? It is frustrating that the results came back negative and my symptoms are back. I just want to know what my diagnosis is or if its something else. My doctor didn't seem very knowledgable about gluten sensitivity and celiac disease, which from reading from many posts is very common. What should my next steps be? (I 'm waiting to hear from my doctor as I just got my results a few hours ago). In a way, having the test come back positive meant that at least I knew what was wrong but having them come back negative, it just feels that I am back to square one.

0

Share this post


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


Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??

0

Share this post


Link to post
Share on other sites

I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)

0

Share this post


Link to post
Share on other sites

And if all else fails and not eating gluten solves your problems, well, I think you know the rest.

richard

0

Share this post


Link to post
Share on other sites

Thank you for that information. It just comes to show that doctors do not have sufficient knowledge on this condition. I didn't have symptoms when I was gluten free and I felt better. Now with eating gluten, the biggest difference is that I am even more tired. It was difficult in the beginning eating gluten free. My doctor didn't really give any helpful advice to what to eat (I lost 10 pounds about less than 2 weeks because I didn't really know what to eat). I have actually had to educate myself on celiac disease because I wasn't reallly obtaining information from my primary doctor and the allergy doctor that reqested the testing.

I have also read about people being non celiac gluten sensitive but that there isn't a blood test, etc to test for this. I don't know if that is something to consider that I could have. I did hear back from my allergy doctor....he said to try gluten free and that there are no other tests to do. I was really disappointed to receive that response. I am considering contacting a local celiac clinic and getting a second opinion. I'm just concerned about the cost for additional testing.

Hello, and welcome.

I always feel so sorry for those whose doctors do things in reverse -- cause the medical reactions to go aay and then test for the medical reactions. It is absolute insanity. Test first, quit gluten second is the mantra we preach over and over. The blood tests are looking for antibodies to gluten, which start fading away once they are no longer exposed to gluten. And the sad part is, he could do an endoscopy with biopsy to test for intestinal damage, but after six weeks that may also be negative because sufficient healing may have taken place to take you out of range of the testing. There is great dispute about how long it takes on gluten to make the testing results valid, but the majority of doctors tend to underestimate the time required. Six to eight weeks for those not severely compromised seems to be a reasonable estimate -- YMMV.

You can continue eating gluten for a sufficient time for your results to be positive (if it is not too painful for you); you can ask for an endoscopy with biopsy to see if you can get a positive result from that (and make sure he takes at least six samples), or you can just try the gluten free diet and see how it works for you -- how did it work for you??

0

Share this post


Link to post
Share on other sites
Ads by Google:


I was tested for wheat, milk, eggs, etc. and the tTG-IgA only. The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate. Maybe I need to accept that I won't likely get a diagnosis and limited gluten based on the fact the effects of my symptoms decreased. But I don't know what internal damage if any I might have. That is what also concerns me.

I agree with mushroom. I would only add get written or electrinic copies of all test results.

Was the tTG-IgA the only celiac antiboody test run? If so, remain on gluten - if you can - and have the full celiac panel along with nutrient testing. Nutritional deficicies is another indicator of the malabsorption found in Celiac Disease.

Let us know if you have more questions. Iit is unfortunate that this diagnosis process is often extremely frustrating.

Hang in there :)

0

Share this post


Link to post
Share on other sites

...

The response from my doctor was that I should limited gluten but not totally eliminate it right away and to test what my body can tolerate.

...

For anyone who IS an actual celiac (regardless of what limited/insufficient testing says) this is horrible terrible horrendous malpractice-level bad advice.

0

Share this post


Link to post
Share on other sites




I had limited gluten for years as I was wheat free 9 years. Gluten free is so different. My life is transformed.

Dreadful advice you got there.

Hope you find a way through, keep asking questions

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
      107,344
    • Total Posts
      935,616
  • Member Statistics

    • Total Members
      65,023
    • Most Online
      3,093

    Newest Member
    kiyachelle
    Joined
  • Popular Now

  • Topics

  • Posts

    • Why not give up supplements for a while?  Not everyone is deficient in vitamins and minerals -- or at least dangerously so.  Ask your doctor to check.   I take no supplements.  My doctor runs a vitamin panel at my yearly check-up.   I do make sure my diet is healthy and varied -- like eating veggies even at breakfast!   People who are gluten free and eat junk food will probably need supplements.   Look to your diet, lotions, shampoo....anything you can swallow to see if you are getting gluten into your diet.  That is most likely the cause of your recent symptoms.  At least rule out that you are having a celiac flare-up.  
    • So to repeat, you will have to do a gluten challenge which is 12 weeks of eating 1 slice of bread per day for the blood tests or 2 weeks of gluten eating for an endoscopy.
    • I'm celiac for less than 3 months.   I'm starting to get concern about getting all the necessary vitamins being gluten free.   Recently my joint pain has increased, pulsating pain in my head, and sore areas in legs and neck have started recently.  Or course, anxiety too. I'm currently taking a Centrum Men's Multivitamin.  Here's what in it: Vitamin A 3,500 IU (29 % as Beta - Carotene)  70%
      Vitamin C 90mg  150%
      Vitamin D 1,000 IU  250%
      Vitamin E 45IU  150%
      Vitamin K 60mcg  75%
      Thiamin 1.2mg  80%
      Riboflavin 1.3mg  76%
      Niacin 16mg  80%
      Vitamin B6 2mg  100%
      Folic Acid 200 mcg  50%
      Vitamin B 126mcg  100%
      Biotin 40mcg  13%
      Pantothenic Acid 15mg  150%
      Calcium 210mg  21%
      Iron 8 mg  44%
      Phosphorus 20 mg  2%
      Iodine 150mcg  100%
      Magnesium 100 mg  25%
      Zinc 11mg  73%
      Selenium 100mcg  143%
      Copper 0.9mg  45%
      Manganese 2.3mg 115%
      Chromium 35mcg  29%
      Molybdenum 50mcg  67%
      Chloride 72 mg  2% Potassium 80 mg  2%   I really can't believe after being diagnoses that my doctor didn't get me a list of recommend supplements to include the vitamin deficiencies by not having gluten in my diet.   Everyone has to do it on their own. I don't really want to avoid taking a bunch of pills in the morning if I can.   But I'm concerned I'm not getting enough Magnesium and Iron.   Other too? Any recommendations of supplements to increase what I'm currently taking.   Or just on supplement that includes everything I need? Thx.            
    • As far as the grey hair goes, I understand how you feel as I started going seriously grey in my mid 20's also.  As cyclinglady stated, there is nothing you can do about that except color you hair or live with the grey hair.  I chose to color it. Grey hair is generally either a genetic thing or it can be the result of vitamin deficiencies or illness.  It also can't be reversed, which would be heavenly, I agree! You definitely need a full  thyroid panel done because you cannot diagnose Hashi's on antibodies alone.  I have Hashi's so know the drill.  No doctor should tell people to just go gluten free without some level of testing for Celiac.  Those with Hashi's can benefit greatly from going gluten free but that is because those that it helps noticeably also probably do have full blown Celiac.....without Celiac or non-Celiac gluten sensitivity, the gluten-free diet won't help. The supplement you mentioned is just that....a supplement.  If you do have true Hashi's, you'll need more than that to help keep thyroid function normal for you.  I think you need to see another doctor because your doc is missing the boat here.  You really should have a full thyroid panel done and a full Celiac panel.  It is important to diagnosis (or not) these 2 conditions early so you won't have more problems down the road.  Can you request more blood work?
    • Lotions used topically are not a concern at all unless they contain gluten and you ingest them into your mouth.  Gluten has to get into your GI tract, (which begins in your mouth) for damage to occur.  Ditto for hair care products.  As most salons have you bend your head back into a sink to wash, the odds of any shampoo or conditioner getting into your mouth are slim to none. If you shower and let the soap and water run down your face, then make your home shampoo/products gluten free.  
  • Upcoming Events