Confused!

[clhsc]

I am so confused! I just got the results of my blood test and they came back normal. How can this be? I have proven to myself time and time again that I have some problems with digesting wheat and wheat products.

At my appointment, my doctor said that I have classic celiac symptoms and was obviously having some malabsorption problems. My response to the diet (when I did it before my exam and now) have been overwhelmingly positive. What's the deal? I am confused and frustrated because I feel like I am back to square one. Should I go through with the colonoscopy (scheduled for Dec. 4) and the scope (will talk about it on Dec. 4) or cancel? Should I stay on the gluten free diet? Is it possible to have celiac disease or gluten sensitivity without a positive blood test?

I know it's not all in my head because I try to convince myself that I feel better than I do. I need some advice - quick - before I completely lose it! Please help me!

Thank you!

[mommida]

It is not uncommon for blood tests to show nothing and a person has very obvious symptoms after ingesting gluten. I can not even try and count all the members on the board are self diagnosed, because of negative blood work and negative biopsy. If you still have other concerns, have the other testing done to be sure there are not other issues along with the "gluten intolerance". Stay on the gluten free diet and never have to get a label of "pre-existing condition" for health insurance or pay a higher premium for life insurance.

I know it is very frustrating , but it may the nicest gift not to have a paperwork diagnoses.

L.

[Guest nini]

you do have your answer you know... positive dietary response is more valid than any diagnostic tool out there. The rate of false negatives with the blood tests is way higher than the medical community will publicly acknowledge. If you have already been gluten-free before testing that would skew your test results, and since you've already been playing around with the gluten-free diet, if you do the biopsy, the chances are you could easily get a false negative with that as well. My personal opinion is that how your body responds to the diet is a much clearer indication of what is going on then any tests... reason? The tests are only looking for specific markers which only show up in the latter (more final) stages of the disease, so you may have caught it early enough that your body is reacting, but you haven't yet produced enough of the antibodies to show up in conventional testing. You may be IgA deficient, which would also make your results appear negative...

More and more Dr's are starting to recognize dietary response as a valid diagnostic tool when the blood tests and even biopsies are inconclusive.The advantage of not having an "official" dx is that it does not appear on your permanent medical records and you can't be denied health insurance or life insurance coverage because of it.

I doubted my "self dx" for too long and I let an ignorant Dr. talk me into going back to eating gluten when I was pregnant with my daughter, and I ended up having a very complicated pregnancy, a premature baby, very nearly died, and it took another 3 years before I was OFFICIALLY dx'ed with Celiac, by that time I was VERY ill. Don't wait until you are extremely ill to change your diet and accept that you are gluten intolerant. You do not need a official dx from a Dr. in order to stay on the diet. It's all up to you.

[mommida]

Thanks Nini,

You said that way better than I did.

L.

[clhsc]

Thanks for your help! I truly appreciate it.

What is an IgA deficiency?

[Guest nini]

Thanks for your help! I truly appreciate it.

What is an IgA deficiency?

Open Original Shared Link

here's a link that explains it... a lot of people that have had false negatives for Celiac have been found to have IgA deficiency, which puts you at risk for other autoimmune disorders as well. The bottom line is that it doesn't matter if it's Celiac or not, if your body is reacting to gluten, you need to avoid it. If you wish to be tested for other autoimmune disorders that is fine, but you don't have to be eating gluten for any of those tests... and a lot of the autoimmune disorders, like Lupus and Arthritis, have shown improvement of symptoms on a gluten free diet, so is it Celiac??? Maybe not, is it something else? Maybe. Is your body reacting to gluten? YES. Do you need to be gluten free? Yes. Can you still have other autoimmune disorders? Yes.

[tarnalberry]

I'd have a couple questions for more details before I could be helpful:

1) Which tests were run and what were the results?

2) Had you been gluten free prior to blood testing, and if so, for how long gluten-free and how long back on gluten?

In the end, however, a postive response on the dietary challenge is the most important - a blood test does not overrule your body's response.

[clhsc]

I'd have a couple questions for more details before I could be helpful:

1) Which tests were run and what were the results?

2) Had you been gluten free prior to blood testing, and if so, for how long gluten-free and how long back on gluten?

In the end, however, a postive response on the dietary challenge is the most important - a blood test does not overrule your body's response.

1. They ran the Celiac Disease Andibody Screening with Reflex Profile, Sedimentation Rate-Westergren, and C-Reactive Protein (Quantative). The C-Reactive Protein was low (.80 mg/L) out of a range of 0.0 to 4.9. I couldn't read the others on the fax so I have called the office to find out the numbers.

2. I had been gluten-lite (very lite - like if I accidentally ate some, none on purpose) since July.

I am so glad I found this forum - it's nice to know there are others like me out there!

[Ursa Major]

Unfortunately, you have one of those ignorant doctors who doesn't know that being gluten-free for four months would result in a false negative, even if you would have tested positive in July. And it is very likely that the endoscopy will be negative for celiac disease as well, same reason.

However, if you want to really know and have an 'official' paper, try Open Original Shared Link. You don't have to be eating gluten for their test, which is way more sensitive than conventional testing.

Also, it doesn't look like your doctor ordered the right tests, anyway. Not that it would have mattered.

The bottom line is, that you feel terrible eating gluten, and feel much better without it. That is enough evidence of at least gluten intolerance, anyway. Stay off it (and don't be talked into a gluten challenge, either) and be happy you figured it out.

[clhsc]

1. They ran the Celiac Disease Andibody Screening with Reflex Profile, Sedimentation Rate-Westergren, and C-Reactive Protein (Quantative). The C-Reactive Protein was low (.80 mg/L) out of a range of 0.0 to 4.9. I couldn't read the others on the fax so I have called the office to find out the numbers.

2. I had been gluten-lite (very lite - like if I accidentally ate some, none on purpose) since July.

I am so glad I found this forum - it's nice to know there are others like me out there!

Here are the results. Please advise as to what the heck this means...

Celiac Antibody Screening:

IgA: 1 with Negative being 0 - 4

TIgA: 1 with Negative being 0 - 3

Immunoglobin A: 86 with ranges of 70 - 400

Sedimentation Rate: 1 with ranges of 0 - 20 (Mom borderline Lupus)

C-Reactive Protein: 0.8 with ranges of 0 - 4.9 (Dad has colitis)

[aikiducky]

What Ursula said - you have been gluten free for too long to get a positive test result. In order to have a positive test at this point you would need to go back on gluten, and not gluten lite but three four slices of bread every day, for several months. Personally I wouldn't do it, but it's your decision.

Pauliina

[tarnalberry]

1. They ran the Celiac Disease Andibody Screening with Reflex Profile, Sedimentation Rate-Westergren, and C-Reactive Protein (Quantative). The C-Reactive Protein was low (.80 mg/L) out of a range of 0.0 to 4.9. I couldn't read the others on the fax so I have called the office to find out the numbers.

2. I had been gluten-lite (very lite - like if I accidentally ate some, none on purpose) since July.

I am so glad I found this forum - it's nice to know there are others like me out there!

Well, what tests are in the celiac screening? It should have included, at least, antigliadin IgA, antigliadin IgG, tissue transglutamase (tTg) IgA, tTg IgG, and total IgA.

If you've been essentially gluten-free for five months, then there's a good chance that your tests would be negative, even if you had celiac disease. You can't show antibodies to something that isn't in your body, even if your body *would* react if that thing were to be there.