Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      READ FIRST: Super Sensitive Celiacs Disclaimer   09/23/2015

      This section of the forum is devoted to those who have responses to gluten beyond the experience of the majority of celiacs. It should not be construed as representative of the symptoms you are likely to encounter or precautions you need to take. Only those with extreme reactions need go to the lengths discussed here. Many people with newly diagnosed celiac disease have a condition known as leaky gut syndrome, which can lead to the development of sensitivity to other foods until the gut is healed - which may take as long as one to three years. At that time they are often able to reincorporate into their diet foods to which they have formerly been sensitive. Leaky gut syndrome leads many people to believe they are being exposed to gluten when they are in fact reacting to other foods.
    • 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.

Test For Gluten Intake
0

31 posts in this topic

I have been on a gluten-free diet for 6 years now. I recntly felt bad, aches pains, hair loss, sweating went to dr and I had low iron. She keeps threatening me with colonoscopy to rule out polyps but I think is could be due to my caeliac. I am not responding to the iron supplements, I had a feacal occult blood test which was negative. What blood tests do I ask for to check that I am not inadvertantly ingesting gluten. I have also got the pain back in my stomach I had that lead me to be diagnosed. I am in Canada and my family doc is clueless. Can anyone advise me please. Thank you

0

Share this post


Link to post
Share on other sites


Have you had your thyroid checked recently?

I did a few months ago but my doc did not tell me the number and unless it is outside of normal she wont treat it. I was low normal before. Can that cause anaemia?

I also found out today my face powder had wheat in it.. soo not good

0

Share this post


Link to post
Share on other sites

I think that you may need a more comprehensive thyroid test panel; because of the celiac you are at risk of autoimmune versions of thyroid problems. If your thyroid is not working well, you could have trouble with iron. I'm sorry, I don't remember the details; please read over at the Stop The Thyroid Madness for some top quality info. They can help you if you need to encourage your doc to get a clue.

http://www.stopthethyroidmadness.com/

This website is also helpful:

https://eaware.org

I am not celiac, but I am hypothyroid and I've been big time anemic. I can relate to all of your symptoms except the stomach pain. I think your hunt for traces of gluten is very important also; but it could easily be both trace gluten and a thyroid issue.

1

Share this post


Link to post
Share on other sites

There is a blood test to check for gluten antibodies. If they are present, you are probably still ingesting gluten. If they are absent, that doesn't prove that you are not ingesting gluten.

Have you tried a diet of only produce and meats? You could do that for a week or so to see if things improve.

Keep a food/symptom journal. Keep your diet simple so that you can track issues. Add only one thing per week because it can take awhile to notice symptoms. Good luck.

0

Share this post


Link to post
Share on other sites
There is a blood test to check for gluten antibodies. If they are present, you are probably still ingesting gluten. If they are absent, that doesn't prove that you are not ingesting gluten.

In people with elevated IgA pre-diagnosis or who were diagnosed via blood work, the AGA IgA/IgG and DGP tests for dietary compliance are extremely reliable and can be trusted upon to prove dietary compliance. If a person is symptomatic and had negative testing on re-test, it most likely is another problem not related to gluten ingestion. It may not be so useful in those who do not have an official diagnosis, for obvious reasons. If these tests were not reliable for re-testing diagnosed Celiacs, they would not be used.

1

Share this post


Link to post
Share on other sites

If a person is symptomatic and had negative testing on re-test, it most likely is another problem not related to gluten ingestion. It may not be so useful in those who do not have an official diagnosis, for obvious reasons. If these tests were not reliable for re-testing diagnosed Celiacs, they would not be used.

http://www.ncbi.nlm.nih.gov/pubmed/15185855

"Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature."

1

Share this post


Link to post
Share on other sites

http://www.ncbi.nlm.nih.gov/pubmed/15185855

"Seronegative celiac disease occurs. Endomysial antibody positivity correlates with more severe villous atrophy and not mode of presentation of celiac disease. Serologic tests, in clinical practice, lack the sensitivity reported in the literature."

You beat me to it. There are other studies too.

0

Share this post


Link to post
Share on other sites

There is a blood test to check for gluten antibodies. If they are present, you are probably still ingesting gluten. If they are absent, that doesn't prove that you are not ingesting gluten.

Maybe I misunderstand what you wrote, but....

if they are present, you ARE ingesting gluten.

if they are absent , that does not prove you're not?

so, in essence, the test is worthless?

I am seronegative myself, so follow up testing is worthless on me anyway.

But if a person was POSITIVE on blood work before DX and then going gluten-free, wouldn't it be a reliable FOLLOW UP test for that person?

(which may be what Gemini was trying to convey?)

0

Share this post


Link to post
Share on other sites

IrishHeart, like you I am seronegative. I was put on a gluten free diet by a rheumatologist without prior referral to a Gastro, and it is now probably too late for a successful biopsy without a lengthy gluten challenge. Would you mind if I was nosey and asked if you managed to get a positive biopsy for your diagnosis, or did your Gastro diagnose you based on your extensive and severe symptoms? Just curious, if you don't mind.

0

Share this post


Link to post
Share on other sites

IrishHeart, like you I am seronegative. I was put on a gluten free diet by a rheumatologist without prior referral to a Gastro, and it is now probably too late for a successful biopsy without a lengthy gluten challenge. Would you mind if I was nosey and asked if you managed to get a positive biopsy for your diagnosis, or did your Gastro diagnose you based on your extensive and severe symptoms? Just curious, if you don't mind.

Don't mind at all! I diagnosed me, brought it back to the Primary care doc who reviewed everything with me and said "OMG, you're right!" Why he coud not see it for years everytime I went back in with symptoms is beyond me, especially since he has 3 kids with celiac. :blink:

The NEW GI doctor I went to read my various reports, saw the many errors made (including an endoscopy done--without a biopsy! <_< ), my copious notes and symptoms list, then, he took into account my malnutrition, rapid 90 lbs. weight loss, various anemias and deficiencies, arthritis, osteopenia, the horrible 3-year decline in my health, serious muscle wasting, hair loss, neurological symptoms, etc, etc, ....positive DQ2 test, family history, various AI diseases and the pictures of me before I got sick and when I was sick (I looked like an emaciated mess) etc.

His response? "I don't know how you went unDXed for so long. It's pretty obvious to me." I said "me, too Doc! :angry: I have had a hell of a fight to get someone to see it. I was told repeatedly that could not be it because the celiac panel was negative."

He was very upset. Thankfully, he has done follow up testing of all kinds and he is going to biopsy me in the Spring to make sure I do not have refractory sprue. No gluten challenge necessary.

He says falsely negative blood work happens all the time. He also says biopsies are often done wrong. And he had a patient with neither of the "so-called celiac genes" with total villous atrophy.

So much for "diagnostic criteria".

0

Share this post


Link to post
Share on other sites

Maybe I misunderstand what you wrote, but....

if they are present, you ARE ingesting gluten.

if they are absent , that does not prove you're not?

so, in essence, the test is worthless?

I am seronegative myself, so follow up testing is worthless on me anyway.

But if a person was POSITIVE on blood work before DX and then going gluten-free, wouldn't it be a reliable FOLLOW UP test for that person?

(which may be what Gemini was trying to convey?)

First off, I am not a doctor or any sort of medical professional. I am a PhD chemist which does not qualify me to give medical advice.

Test levels going down show that you diet is better. Test levels being negative do not show that your diet is perfect.

That doesn't mean the tests are worthless. I had them. They aren't perfect. There isn't much in this world that is.

0

Share this post


Link to post
Share on other sites

IrishHeart - Wow, its one hell of a story. I don't know whether to envy you for eventually finding a diagnostic prince, or to commiserate the fact that you suffered for so long. I'm pretty sure I've had it since my teens or early twenties, but maybe on a "sub-clinical" level until 2-3 years ago. My health was just starting to cascade downwards in a fast, accelerating way similar to how you describe when I went gluten free and put a stop to it. I guess I was luckier than you in that we have known for 10 years that we have celiac in the family (there were 2 cases until this year, now, including me, there are 6, with another probable case still in diagnosis), we just had no idea that gluten intolerance could have such varied presentations, with widely differing levels of sensitivity.

I really, really wish that the doctors who write the medical papers summarising clinical research/experience and who have a hand in setting the clinical diagnosis guidelines would acknowledge the imperfection of the blood tests and the difficulty of obtaining a successful biopsy. Then maybe clinicians wouldn't give such black and white answers when they can't tick all the boxes that their guidelines indicate. Then maybe people like you and I (and others in my family) wouldn't go undiagnosed for so long, destroying our health in the process.

I know you have written about yourself many times on this board, in snippets, helping people with their journey. Had you thought maybe about posting a full account of your seronegativity and symptom history in the pre-diagnosis section for others to see and learn from? Maybe myself and others who have had similar experiences could add our stories it to reinforce the message? Maybe if Admin thought it was a good idea, it could even be pinned to that forum, so it didn't disappear under the weight of new posts? What do you think?

BTW - I think you and Dilettantesteph are saying the same thing about the tests. You are picking each other up on semantics!

0

Share this post


Link to post
Share on other sites

BTW - I think you and Dilettantesteph are saying the same thing about the tests. You are picking each other up on semantics!

No, I think we are just reinforcing each other, actually. :)

I think many people have written about the same issues I had trying to be DXed---that is what drew me to this Board in the first place.

I am sure my story is in the pre-DX section somewhere.

Doctors are reluctant to DX without the blood panel and the biopsy.

In the end, it comes down to finding someone who gives a crap enough to look at the patient's symptoms and to follow through with you. IMHO

0

Share this post


Link to post
Share on other sites

First off, I am not a doctor or any sort of medical professional. I am a PhD chemist which does not qualify me to give medical advice.

Test levels going down show that you diet is better. Test levels being negative do not show that your diet is perfect.

That doesn't mean the tests are worthless. I had them. They aren't perfect. There isn't much in this world that is.

Just to qualify: I meant "worthless" in regards to being VALID for seronegative people, that's all.

I am not disagreeing with you regarding the testing not being perfect nor am I disputing what you said or arguing the point.

I am saying essentially the same thing and wondering (just aloud here--I am not asking anyone to be a doctor) what can she do then to determine if she has elevated levels--if these tests are deemed "unreliable"?

0

Share this post


Link to post
Share on other sites

I know what you mean now, I was really rushed this morning so I didn't read as carefully as I might have.

Maybe enterolab. Enterlab says that the fecal tests are more sensitive than the blood tests and pick up antibodies before intestinal damage occurs. That is their explanation for the false negatives. I don't know what to think about them. I know that some swear by them and some think that they aren't any good. We're getting follow up testing on my husband and daughter with them so maybe I'll have a better opinion at that point.

I know my daughter's blood test was negative and her fecal test positive. When she went off gluten she noticed a major effect and now she gets glutened by small amounts, but she's less sensitive than my son and I. That would be consistent with the test being valid, but that's only one case.

I know someone else who has had many follow up enterolab tests as he cut more and more cc out of his diet and becomes less and less symptomatic. His numbers eventually went down to zero. That's not my personal experience, so maybe I shouldn't have mentioned it, but it is information I considered before ordering a repeat test for my daughter. Go ahead and edit my post if I shouldn't have put that.

I got negative blood tests after a year. I don't dare get the fecal test because I don't know how much more I could do to rid my diet of cc. I'm happy if I'm symptom free. I think I don't want to know if there is still gluten in my diet. Plus, I won't know if it is from an old glutening or a current glutening unless I can stay symptom free for a long time before I give the sample. That is a challenge.

There really needs to be more done by the medical professionals in terms of developing a protocol when it comes to follow up with this condition. Each doctor doesn't things a little differently.

0

Share this post


Link to post
Share on other sites

Sadly, the "medical professionals" :rolleyes:

say fecal and saliva testing are not valid.

Enterolab testing is being "poo-poohed". And I am not sure why, to be honest. Some say it is because "he" is not publishing and peer-reviewed. Okay, I understand that part. I really do.

Yet, the very same saliva test (for genetic testing) I did with that lab?--- yielded the EXACT same result as a fecal test (for genetic testing) by another lab --approved by my insurance---that my doctor used. It is considered "valid".

Same result, different labs. :unsure:

So what are we to do???

So many sick people. Nowhere to turn--- if the testing can often be questioned . :(

I am grateful that my GI doctor did a small bowel follow through (checking for lymphoma, etc), testing for Crohn's and other inflammatory bowel diseases and continuous lab work and is willing to scope/biopsy me ( a year plus after DX ) because I did not get the proper attention BEFORE DX.

0

Share this post


Link to post
Share on other sites

Enterolab testing is being "poo-poohed".

:lol:

I think it is because it comes up with way too many positives. Fecal tests are designed to detect problems before intestinal damage occurs. That way it show positives when biopsies are negative so it considered incorrect. It's a bit of a "Catch 22"

I think that's why he seems to have gotten fed up with the GI celiac community. He wants to help people before they get terribly damaged, not after. Whether or not this is misguided, I can't say.

So many sick people. Nowhere to turn. :(

So true.

0

Share this post


Link to post
Share on other sites

The NEW GI doctor I went to read my various reports, saw the many errors made (including an endoscopy done--without a biopsy! <_< ), my copious notes and symptoms list, then, he took into account my malnutrition, rapid 90 lbs. weight loss, various anemias and deficiencies, arthritis, osteopenia, the horrible 3-year decline in my health, serious muscle wasting, hair loss, neurological symptoms, etc, etc, ....positive DQ2 test, family history, various AI diseases and the pictures of me before I got sick and when I was sick (I looked like an emaciated mess) etc.

His response? "I don't know how you went unDXed for so long. It's pretty obvious to me." I said "me, too Doc! :angry: I have had a hell of a fight to get someone to see it. I was told repeatedly that could not be it because the celiac panel was negative."

He was very upset. Thankfully, he has done follow up testing of all kinds and he is going to biopsy me in the Spring to make sure I do not have refractory sprue. No gluten challenge necessary.

He says falsely negative blood work happens all the time. He also says biopsies are often done wrong. And he had a patient with neither of the "so-called celiac genes" with total villous atrophy.

So much for "diagnostic criteria".

My Celiac blood test was negative. I was scoped though, and had severe villous flattening. The GI DXed me because of it. I also had pretty rapid weight loss, muscle wasting, numerous vitamin deficiencies, ostopenia, neurological symptoms,insomnia, anxiety etc.

When I went back to my PCP for follow up I was told that he didn't agree with my DX. I was "too old" and my blood test was negative.

I've had very slow healing gluten-free, and no cooperation from my PCP with blood tests, etc. I also went soy, dairy, peanut, and MSG free. Was rescoped by a different GI 6mos. gluten-free to see what was going on. Right after the procedure he said it looked like I had Refractory sprue. I was also given the genetic test at that time.

When I called to find out the results of that second scope/biopsy, I was told I don't have Celiac disease..because my gene test was negative! :o

I actually have the same genes as you IH..I think? A DQ2.2? The severity of our damage..and the slow healing is also very similar?

The blood tests are maddening to me. If the Dr. or lab don't read them right..the DX isn't made.

There's got to be a better way? Sometimes I wonder if our particular genes make us react to gluten to such a severe extent..or is there some other Celiac-like disease that we have? IMO they need to make it more common knowledge to Dr.s that the DQ2 and DQ8 aren't the only Celiac genes..and that 20-30% of Celiacs have negative blood tsts!

Right now...I'm waiting for an appointment to Mayo clinic in MN. I went to the one in FL and they referred me to the other one. My DX is still in question!

0

Share this post


Link to post
Share on other sites

My Celiac blood test was negative. I was scoped though, and had severe villous flattening. The GI DXed me because of it. I also had pretty rapid weight loss, muscle wasting, numerous vitamin deficiencies, ostopenia, neurological symptoms,insomnia, anxiety etc.

I have read your story on other threads and find this almost as ridiculous as my own experiences. :rolleyes:

I am healing my gut and resolving vitamin deficiencies, etc.-- but I still have bone/joint/muscle pain and slow regrowth of my hair. I am, indeed, a slow healer.

I do not know why your PCP finds this diagnosis to be questionable at all.

Frankly, why isn't the GI doctor who DXed you doing the follow up?? I do not rely on anyone else except my GI to care for me regarding the dozens of celiac-induced symptoms.

0

Share this post


Link to post
Share on other sites

I have read your story on other threads and find this almost as ridiculous as my own experiences. :rolleyes:

I am healing my gut and resolving vitamin deficiencies, etc.-- but I still have bone/joint/muscle pain and slow regrowth of my hair. I am, indeed, a slow healer.

I do not know why your PCP finds this diagnosis to be questionable at all.

Frankly, why isn't the GI doctor who DXed you doing the follow up?? I do not rely on anyone else except my GI to care for me regarding the dozens of celiac-induced symptoms.

I went to second GI because I had SO many symptoms that weren't improving, along with a PCP that kept telling me my DX was wrong. I guess I thought a second set of eyes might be a good idea?

The second GI made my DX even more questionable. He referred me to Mayo and I figured they could tell me for sure one way or the other? Nope! :blink:

I DID get a new PCP though. She told me up front that she didn't know a lot about Celiac disease, but was eager to learn more. She said she was taking my file home with her over the weekend to review it, and would be looking up info on Celiac too.

When I went back to her last week she said at first she thought I was taking a lot of supplements, but once she got my bloodwork back she changed her mind. She said it looks like I'm on the right track, and have obviously done a lot of research into my condition. She told me to keep doing what I'm doing as I wait for my Mayo appointment.

If I need any GI follow up after Mayo..I'll be going to the first GI I saw. The second one was an arrogant *****!

:angry:

0

Share this post


Link to post
Share on other sites

Bubba's mom. What a difficult time. I hope that you are keeping a food/symptom journal. I have gotten by with that and many challenge/elimination studies. I wish you the best. It is really too bad the experts done know more about this condition at this time. At least we haven't been told to only eat bananas like in the old days.

0

Share this post


Link to post
Share on other sites

Bubba's mom. What a difficult time. I hope that you are keeping a food/symptom journal. I have gotten by with that and many challenge/elimination studies. I wish you the best. It is really too bad the experts done know more about this condition at this time. At least we haven't been told to only eat bananas like in the old days.

Thanks Steph. I was told early on to start a food log by someone here. It was how I figured out my soy and MSG intolerance. I told my PCP I was now reacting badly to soy as well as gluten, so that info might be added to my file for future reference.

After I got copies of my medical records so I could switch PCPs I found the Dr. wrote that I "had a poor grasp of my illness, and now think that I'm intolerant to many other foods". :o

My experience with my former PCP was infuriating. He dismissed my DX, then accused me of non-compliance to a gluten-free diet when my symptoms didn't magically go away overnight once I went gluten-free. Talk about mixed messages!

0

Share this post


Link to post
Share on other sites

Please forgive my ignorance, but why isn't DQ2.2 the same as DQ2? Isn't DQ2.2 just a subset of DQ2?

Sorry if this is a dumb question, but I understand very little about the HLA typing, other than the fact that there are 2 key groups researchers say are POTENTIAL celiacs, with celiac being uncommon (but they don't know uncommon) outside of these groups?

Thanks

0

Share this post


Link to post
Share on other sites

Please forgive my ignorance, but why isn't DQ2.2 the same as DQ2? Isn't DQ2.2 just a subset of DQ2?

Sorry if this is a dumb question, but I understand very little about the HLA typing, other than the fact that there are 2 key groups researchers say are POTENTIAL celiacs, with celiac being uncommon (but they don't know uncommon) outside of these groups?

Thanks

You are correct as far as I know. HLA-DQ2 qnd DQ8 are considered the genes most commonly associated with celiac disease. DQ2.2 is the rarest subset of the DQ2 (DQ 2.5 being the more common) and from the last article I read, it is found in 1-2 % of celiacs. When I had gene testing done, one lab report specifically said it is RARE for someone with 2.2 to develop celiac and the other lab test (my new doc ordered yet another genetic test) only reported me as --and I am quoting: "POSITIVE for CELIAC GENE HLA-DQ2". I carry two sets--one from each parent.

There is continuing research on the genetics involved. The most interesting aspect to me is that some people who have the DQ2 or DQ8 genes NEVER develop celiac and that some folks carrying genes OTHER than DQ2 or DQ8 ---DO have celiac.

Again, these are the problems with diagnostic criteria. Some literature still states unequivocally that someone WITHOUT DQ2 or DQ8 cannot have celiac because they do not have THOSE genes.

That simply is not the case.

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