30 replies to this topic

[Hells Bells]

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

[RollingAlong]

Have you had your thyroid checked recently?

[Hells Bells]

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

[RollingAlong]

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.

[dilettantesteph]

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.

[Gemini]

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.

[T.H.]

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."

[dilettantesteph]

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.

[IrishHeart]

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?)

[UKGail]

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.

[IrishHeart]

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.
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! 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".

[dilettantesteph]

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.

[UKGail]

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!

[IrishHeart]

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

[IrishHeart]

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"?