Just Plain Confused

[Lfrost]

Ok, so we got our son's Celiac panel back (blood work) and he is negative in all areas. The nurse actually said he was at the low end of all areas. Now I am confused.

My doctor told me my son was allergic to wheat last week and drew blood that day (before cutting any wheat out of his diet). Since then I decided to cut wheat out so I did for a few days, but people said I should leave it in until testing was done. So I gave it back to my son. When I gave it back, he got a purple, pin-point rash on his chin, was complaining that he was itchy and was scratching his arms, etc. He also went into a deep sleep immediately after eating bread. At night, (the last two since bringing wheat back) he has wet the bed and not woken up which is not like him.

So, I expected to see that he should have some sign of gluten intolerance or something, right? Well, that isn't what the blood test said. Also, according to his nurse we can cut wheat out 'If we want to'. I asked what do you mean of we want to? Isn't he allergic to it? I guess that he doesn't even have a 'high' allergy to wheat. She said that his level is .49 to wheat (normal is below .35).

Basically, now we are being kind of 'kicked to the curb'. They aren't planning any other testing, etc. What I don't understand is why my son has so many GI issues! Why is he always constipated? Why did the constipation go away when we took out dairy, but then turn into puking EVERY morning for a month? Why did the puking go away when we gave back milk, but now he is constipated again? Why does he wet the bed all of a sudden? Why has he been itching, sleeping, and now getting a rash when he eats bread?

GRRRR! I am sorry for babbling, but I am extremely frustrated and now don't know what to do. I would really like a referral to a GI, but with the negative blood test, I think my doctor is thinking we are done with this issue, saying 'go ahead and take away the wheat, if you want.'

[VydorScope]

Llfrost,

My suggestion. Go gluten free for a while. See if he gets better. If so, then you have your answer. The tests are not perfect. Your son obviously is reacting to something and it seems like it could be wheat. So eliminate it and see how things go. That really is your best course of action at this point.

[Sesara]

Ok, so we got our son's Celiac panel back (blood work) and he is negative in all areas. The nurse actually said he was at the low end of all areas. Now I am confused.

My doctor told me my son was allergic to wheat last week and drew blood that day (before cutting any wheat out of his diet). Since then I decided to cut wheat out so I did for a few days, but people said I should leave it in until testing was done. So I gave it back to my son. When I gave it back, he got a purple, pin-point rash on his chin, was complaining that he was itchy and was scratching his arms, etc. He also went into a deep sleep immediately after eating bread. At night, (the last two since bringing wheat back) he has wet the bed and not woken up which is not like him.

So, I expected to see that he should have some sign of gluten intolerance or something, right? Well, that isn't what the blood test said. Also, according to his nurse we can cut wheat out 'If we want to'. I asked what do you mean of we want to? Isn't he allergic to it? I guess that he doesn't even have a 'high' allergy to wheat. She said that his level is .49 to wheat (normal is below .35).

Basically, now we are being kind of 'kicked to the curb'. They aren't planning any other testing, etc. What I don't understand is why my son has so many GI issues! Why is he always constipated? Why did the constipation go away when we took out dairy, but then turn into puking EVERY morning for a month? Why did the puking go away when we gave back milk, but now he is constipated again? Why does he wet the bed all of a sudden? Why has he been itching, sleeping, and now getting a rash when he eats bread?

GRRRR! I am sorry for babbling, but I am extremely frustrated and now don't know what to do. I would really like a referral to a GI, but with the negative blood test, I think my doctor is thinking we are done with this issue, saying 'go ahead and take away the wheat, if you want.'

Get a copy of the bloodwork they did. If your son is "low" on IgA, he could theoretically be IgA deficient. If that is the case, normal IgA tests won't work for him, but people who are IgA deficient have a 10 to 15 times higher risk of Celiac than the average population. Also, you need to find out how complete of a panel they actually ran on him - they may have done the bare minimum, in which case, again, you don't have all the information. So call and find out how quickly they can get you that info, and then post it here and people can tell you. Also, did they take any other bloodwork? Enzyme panels, thyroid, etc? Those can also sometimes give very useful info.

[Lfrost]

Get a copy of the bloodwork they did. If your son is "low" on IgA, he could theoretically be IgA deficient. If that is the case, normal IgA tests won't work for him, but people who are IgA deficient have a 10 to 15 times higher risk of Celiac than the average population. Also, you need to find out how complete of a panel they actually ran on him - they may have done the bare minimum, in which case, again, you don't have all the information. So call and find out how quickly they can get you that info, and then post it here and people can tell you. Also, did they take any other bloodwork? Enzyme panels, thyroid, etc? Those can also sometimes give very useful info.

I will request a copy of the panel tomorrow. Sorry for the frustration and ranting earlier, it can get so frustrating knowing there is something wrong, but not being able to do anything about it. My son (4 years old) has been wetting his pants all day today and not even realizing it which is very frustrating, too because it is not at all like him. I must have overdone the 'wheating' after taking it away for a few days.

My son's nurse did get back to me at the end of the day today. She had talked to the doctor and they would like us to go gluten-free and dairy light (no more than 6 oz. of skim milk a day, if any). They would also like us to keep a food diary and note any changes that may occur. After the 30 days, we have an appointment to discuss the results and I guess we go from there. I was planning on going gluten-free anyway after the negative bloodwork, but at least they are acting like they might care...although they still haven't given me a GI referral, yet.

[VydorScope]

I will request a copy of the panel tomorrow. Sorry for the frustration and ranting earlier, it can get so frustrating knowing there is something wrong, but not being able to do anything about it. My son (4 years old) has been wetting his pants all day today and not even realizing it which is very frustrating, too because it is not at all like him. I must have overdone the 'wheating' after taking it away for a few days.

My son's nurse did get back to me at the end of the day today. She had talked to the doctor and they would like us to go gluten-free and dairy light (no more than 6 oz. of skim milk a day, if any). They would also like us to keep a food diary and note any changes that may occur. After the 30 days, we have an appointment to discuss the results and I guess we go from there. I was planning on going gluten-free anyway after the negative bloodwork, but at least they are acting like they might care...although they still haven't given me a GI referral, yet.

We all get frustrated and rant. This is our kids we are talking about after all, so no worries there.

What your son's nurse said do to is a good idea for the most part, but not sure about "dairy light"? I would personally treat it as all or nothing. Not suggesting you ignore your doctor, but if it was me I would question them on why "light" verse no milk at all.

[Sesara]

We all get frustrated and rant. This is our kids we are talking about after all, so no worries there.

What your son's nurse said do to is a good idea for the most part, but not sure about "dairy light"? I would personally treat it as all or nothing. Not suggesting you ignore your doctor, but if it was me I would question them on why "light" verse no milk at all.

I agree with Vincent completely. IF your son has dairy issues, they are either being caused by casein intolerance, which means any cow's milk is bad, or lactose intolerance, in which case, they suspect that there is damage to the intestinal villi. In that case, the tips of the villi, which normally manufacture the enzyme that digests lactose, are unable to produce. So while you are healing the gut, lactose is going to irritate it to some degree.

We are working on a gut healing protocol here, and I have had to cut out all dairy from DS's diet as part of it. It's tough in that he misses cheese, but he looooves the So Delicious vanilla coconut milk and it's perfectly good as a substitute, without the problems of soy or rice milk. Almond milk would be another good choice.

[GFinDC]

Hi,

The allergy tests are looking for an igE reaction. IgE is a type of immune cell. There are other types like IgG and IgA. Those types are more the problem with celiac disease. IgE cells cause the hayfever typoe symptoms and can be life threatening due to anaphylaxis (sp). So if he has a true allergy that is dangerous thing to keep feeding him the wheat. Allergic reactions can get worse suddenly with repeated exposure.

But, on the other hand, (here come the exceptions). Quite a few people on this forum have reported hayfever like symptoms and reactions that resolved or reduced in severity after they the went gluten-free. So there may be some tie to IgE reactions for some people. I had pretty severe hayfever symptoms for many years that mostly went away after going gluten-free.

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[Lfrost]

So I got the paperwork from my son's blood tests. The first one tested allergens. He does have multiple allergens, but they are all 'low' (0.35-0.70), or 'clinical relevance undetermined' (0.10-0.34). Here are his results:

D. FARINAE (MITE) ALLERGEN 0.51 H

CAT DANDER ALLERGEN 0.20

DOG DANDER ALLERGEN 0.51 H

MILK ALLERGEN 0.30

SOYBEAN ALLERGEN 0.25

EGG WHITE ALLERGEN 0.31

WHEAT ALLERGEN 0.49 H

PEANUT ALLERGEN 0.31

FISH/COD ALLERGEN 0.17

COCKROACH ALLERGEN 0.35 H

ALTERNARIA MOLD ALLERGEN 0.29

**Allergen results of 0.10-0.34 kU/L are intended for specialist use as the clinical relevance is undetermined. Although increasing ranges are reflexive of increasing concentrations of allergen-specific IgE, this may not correlate with the degree of clinical response when challenged with a specific allergen. The correlation of allergy laboratory results with clinical history is essential. A negative test may not rule out clinical allergy.**

The second blood test is his Celiac Panel.

Endomysial Antibody IgA Results < 1 : 5 Reference Range < 1 : 5

Endomysial Antibody, IgA Result Interpretation, IFA Method:

< 1 : 5 ........................Negative: No significant level of detectable Endomysial IgA antibody

> or = 1 : 5 .................Positive: Endomysial IgA antibody detected

Tissue Transglutaminase IgA Results 2 Reference Range < 20 EU

Tissue Transglutaminase IgA Antibody Result Interpretations, ELISA Method:

< 20 EU..................None Detected

20-30 EU................Weak Positive

> 30 EU..................Positive

EU........ELISA Units

Test procedure

GLIADIN IGG

GLIADIN IgG Results 2 Reference Range < 20 EU

GLAIDIN IGA

GLAIDIN IgA Results 2 Reference Range < 20 EU

GLAIDIN IgG and IgA Antibody Result Interpretations, ELISA Method:

< 20 EU ................Negative

20-30 EU...............Weak Positive

> 30 EU.................Positive

IgA, TOTAL SERUM

IgA 63 23-160 mg/dL

So, does this basically mean, not celiac, but wheat or something else possibly causing issues?

[Sesara]

So I got the paperwork from my son's blood tests. The first one tested allergens. He does have multiple allergens, but they are all 'low' (0.35-0.70), or 'clinical relevance undetermined' (0.10-0.34). Here are his results:

D. FARINAE (MITE) ALLERGEN 0.51 H

CAT DANDER ALLERGEN 0.20

DOG DANDER ALLERGEN 0.51 H

MILK ALLERGEN 0.30

SOYBEAN ALLERGEN 0.25

EGG WHITE ALLERGEN 0.31

WHEAT ALLERGEN 0.49 H

PEANUT ALLERGEN 0.31

FISH/COD ALLERGEN 0.17

COCKROACH ALLERGEN 0.35 H

ALTERNARIA MOLD ALLERGEN 0.29

**Allergen results of 0.10-0.34 kU/L are intended for specialist use as the clinical relevance is undetermined. Although increasing ranges are reflexive of increasing concentrations of allergen-specific IgE, this may not correlate with the degree of clinical response when challenged with a specific allergen. The correlation of allergy laboratory results with clinical history is essential. A negative test may not rule out clinical allergy.**

The second blood test is his Celiac Panel.

Edndomysial Antibody IgA Results < 1 : 5 Reference Range < 1 : 5

Endomysial Antibody, IgA Result Interpretation, IFA Method:

< 1 : 5 ........................Negative: No significant level of detectable Endomysial IgA antibody

> or = 1 : 5 .................Positive: Endomysial IgA antibody detected

Tissue Transglutaminase IgA Results 2 Reference Range < 20 EU

Tissue Transglutaminase IgA Antibody Result Interpretations, ELISA Method:

< 20 EU..................None Detected

20-30 EU................Weak Positive

> 30 EU..................Positive

EU........ELISA Units

Test procedure

GLIADIN IGG

GLIADIN IgG Results 2 Reference Range < 20 EU

GLAIDIN IGA

GLAIDIN IgA Results 2 Reference Range < 20 EU

GLAIDIN IgG and IgA Antibody Result Interpretations, ELISA Method:

< 20 EU ................Negative

20-30 EU...............Weak Positive

> 30 EU.................Positive

IgA, TOTAL SERUM

IgA 63 23-160 mg/dL

So, does this basically mean, not celiac, but wheat or something else possibly causing issues?

As I have learned the hard way, this is not a complete Celiac panel - it certainly doesn't look at EMA, though I'm still unclear as to what else is missing. It is probably complete to them because it is all the tests their lab can do; however, it does not look at all the antibody tests that help to detect Celiac. My son's IgA tests came back negative but I am unconvinced that he does not have celiac. I think with these results, you can either: ask for further testing such as the Celiac Plus panel from Prometheus labs, which will look for the full panel of blood tests, ask for a biopsy, or trial a gluten free diet with the diagnosis of wheat allergy. Obviously your son does have one, the question is going to be how sensitive he truly is to wheat. But it is still a medical diagnosis that will help others understand not to give him wheat. So it's really up to how much you want to pursue it. However, as you go more gluten free, you may find his reactions get worse and worse, in which case your husband especially is going to have to understand about 100% compliance and treating it as Celiac. If you don't think that he will take it seriously enough without the diagnosis, you may want to pursue testing in that vein.

[Lfrost]

As I have learned the hard way, this is not a complete Celiac panel - it certainly doesn't look at EMA, though I'm still unclear as to what else is missing. It is probably complete to them because it is all the tests their lab can do; however, it does not look at all the antibody tests that help to detect Celiac. My son's IgA tests came back negative but I am unconvinced that he does not have celiac. I think with these results, you can either: ask for further testing such as the Celiac Plus panel from Prometheus labs, which will look for the full panel of blood tests, ask for a biopsy, or trial a gluten free diet with the diagnosis of wheat allergy. Obviously your son does have one, the question is going to be how sensitive he truly is to wheat. But it is still a medical diagnosis that will help others understand not to give him wheat. So it's really up to how much you want to pursue it. However, as you go more gluten free, you may find his reactions get worse and worse, in which case your husband especially is going to have to understand about 100% compliance and treating it as Celiac. If you don't think that he will take it seriously enough without the diagnosis, you may want to pursue testing in that vein.

We are currently doing a 30 day trial of Gluten-free (doctor says stay light on dairy as well, but we are just cutting dairy, too). After the outbreak of my son's rash right after having gluten/wheat, my husband is now fully on board. He is actually going gluten-free at home with the rest of us! (We are finishing off anything gluten in the house and replacing with all gluten-free). I am kind of excited to try out the new baking challenges (I am a school teacher and summer has just begun so I get some time to play around with different recipes). Also, after giving my son wheat after only a few days off, he has been wetting his pants a lot and not noticing it. It is really strange. I am hoping now that the gluten/wheat/dairy are being cut out of his diet, the wetting will go away. He has never been one to have pee-pee accidents...BMs are a whole different issue (because of the constant "C" and "D" problems), but hopefully by the end of summer we will have a happy, healthy, FULLY potty-trained 4 year old little boy! Here's to hoping, anyway!