New And So Confused!

[ellen101]

I recently went through testing with my doctor due to horrible SI joint pain, stomach issues and facial twitching. She ordered food allergy testing panel and I was allergic to gluten as well as quite a few other things. In looking at the blood work I'm confused if the correct tests were done for celiacs.

IgA. 183. (81-463)

IgG 1608. (694-1618)

IgM. 122. (48-271)

IgE 577. (<or=114)

CRP 2.1. (<1.0)

CD8-CD57+lymphs 26. (60-360)

Human trans growth fact.beta 1. 5220. (334-2382)

Thyroglobulin antibody. <20. (<=40)

Thyroid peroxidase AB 224. (<35)

Low iron, low magnesium

Interestingly enough I recently had a tooth pulled and the oral surgeon recommended digestive enzymes for swelling. Within days of beginning them my stomach issues cleared up and my joint pain was gone. I stopped them 2 days ago for some stool testing and I am back in horrible pain and my stomach is acting up.

I have a history of Lyme disease and psoriasis.

I'm really confused as to what to do...with an allergy to gluten is it OK to eat it occasion? Do these tests show negative to celiacs?

[psawyer]

Welcome to the board.

I can't comment on the tests because I don't know what tests were done. The names given are incomplete--there are numerous tests whose names contain IgA and IgG. Those are classes of antibodies, not specific types.

Allergies are specific to a certain type of gluten. You may, for example, be allergic to wheat. Celiac disease is an autoimmune reaction to a class of prolamines collectively called gluten--it is not an allergy.

If you are allergic to something, it might possibly be okay to eat it once in a while, although I would not recommend it. A food allergy escalates, and anaphylaxis can be fatal. If you do have celiac disease, then any cheating will seriously compromise your body's ability to heal and stay healed.

[bartfull]

Psoriasis is one of the symptoms of celiac. If you adhere to a STRICTLY gluten-free diet and notice within a few weeks that your psoriasis is starting to clear up you'll know you're on the right track. Mine did. Now, unless I get glutened or exposed to any of my other intolerances, I am psoriasis-free.

 

Read the "Newbie 101" thread to learn all of the places gluten can hide (such as scratched teflon, strainers, wooden spoons, and toasters.) Then ask lots of questions here. We'll help.

[nvsmom]

I think your IgA, IgG and IgM are measurements of the total serum amounts of those antibodies. I'm basing that guess on the normal reference range for your IgA, which is usually about that amount... It is just a guess though.

 

The total serum IgA is often measured in celiacs to ensure that you have enough antibodies for the actual celiac tests that use those antibodies to be accurate. You make enough Iga to have accurate celiac testing. the most common celiac tests are;

 

ttg IgA and ttg IgG

DGP IgA and DGP IgG

EMA IgA

AGA IgA and AGA IgG (older and less used tests)

 

For these tests to be accurate, you need to be consuming daily gluten (approx. 2 slices of bread) for about 4-8 weeks prior to testing. If you have positive tests, and/or a positive endoscopic biopsy, that would indicate celiac disease (an autoimmune disease), which means you must not eat gluten anymore, ever, in your lifetime. 100% gluten-free.

 

You should ask your doctor about your TPO ab test too. You are making autoantibodies against your thyroid - that would indicate Hashimoto's thyroidits, possibly Grave's disease, or (very slim chance) thyroid cancer. You should request more thyroid tests like:

 

TSH (should be near a 1)

Free T4 and free T3 (should be about the 50-75% range of your lab's normal reference range)

T4 or T3 is often tested but is not as helpful as the free T's

ultrasound on your thyroid and have your doctor palpitate it for nodules

 

I reccommend googling hypothyroidism and see if those symptoms fit you - I would be willing to bet you have some hypo symptoms.

 

Best wishes.

[ellen101]

I think your IgA, IgG and IgM are measurements of the total serum amounts of those antibodies. I'm basing that guess on the normal reference range for your IgA, which is usually about that amount... It is just a guess though.

The total serum IgA is often measured in celiacs to ensure that you have enough antibodies for the actual celiac tests that use those antibodies to be accurate. You make enough Iga to have accurate celiac testing. the most common celiac tests are;

ttg IgA and ttg IgG

DGP IgA and DGP IgG

EMA IgA

AGA IgA and AGA IgG (older and less used tests)

For these tests to be accurate, you need to be consuming daily gluten (approx. 2 slices of bread) for about 4-8 weeks prior to testing. If you have positive tests, and/or a positive endoscopic biopsy, that would indicate celiac disease (an autoimmune disease), which means you must not eat gluten anymore, ever, in your lifetime. 100% gluten-free.

You should ask your doctor about your TPO ab test too. You are making autoantibodies against your thyroid - that would indicate Hashimoto's thyroidits, possibly Grave's disease, or (very slim chance) thyroid cancer. You should request more thyroid tests like:

TSH (should be near a 1)

Free T4 and free T3 (should be about the 50-75% range of your lab's normal reference range)

T4 or T3 is often tested but is not as helpful as the free T's

ultrasound on your thyroid and have your doctor palpitate it for nodules

I reccommend googling hypothyroidism and see if those symptoms fit you - I would be willing to bet you have some hypo symptoms.

Best wishes.

Free T3. 2.85. (2.30-4.20)

Free T4. 1.19. (0.71-1.42)

My doctor recommended going gluten free due to the allergy testing results, so now I'm thinking it may be too late to pursue more celiac testing...

[nvsmom]

If you recently went gluten-free,  you might still have enough autoantibodies to test well. Some people stop making them as soon as they stop gluten, but for others it can take months for it to leave their system. If it was just in the last week or so, you could consider eating a bit more gluten for a few days and get tested, but if you've been off gluten for any length of time (month or more), you will probably need to resume eating gluten for a few weeks to get an accurate result.... That won't be fun if you have an allergy though. 

 

I would just get tested soon if you recently went off gluten... and you are interested in testing for celiac disease - you never know, it could work.

 

If you do think you have a gluten intolerance, I would say that there is a good chance you have celiac disease because you have autoimmune activity on your thyroid woth the positive TPO Ab, and autoimmune problems tend to run in clumps - people who get one AI disease tend to get another. When you go gluten-free, go 100% gluten-free for at least 4 months to see how your body does. Give it a lot of time as some symptoms, like pain, tend to take a long time to go away.

 

Your Free T's are not ideal (I'm not a medical professional though, just someone who has hypothyroidism and has done a lot of reading on the topic).

 

Your Free T3 is below the 30% mark or your lab's normal reference range. That's not very good. FT3 is the active/useable hormone that is in your blood, and it is what keeps your metabolism going.  Yours could be considered a bit low.

 

Your FT4 is in a pretty good spot, at about 65% of your lab's normal reference range. I'm honestly a bit surprised this isn't a bit lower with your high TPO Ab. The T4 is converted into T3 in your organs, and you appear to have enough.

 

Do you feel hypo with dry skin and hair, thinning hair, sluggish digestion and constipation, fatigue, achiness, and feeling cold? You could be slightly, subclinically hypothyroid. If you think it's an issue for you, discuss it with your doctor.

 

Best wishes. I hope you feel well soon.

[ellen101]

If you recently went gluten-free,  you might still have enough autoantibodies to test well. Some people stop making them as soon as they stop gluten, but for others it can take months for it to leave their system. If it was just in the last week or so, you could consider eating a bit more gluten for a few days and get tested, but if you've been off gluten for any length of time (month or more), you will probably need to resume eating gluten for a few weeks to get an accurate result.... That won't be fun if you have an allergy though. 

 

I would just get tested soon if you recently went off gluten... and you are interested in testing for celiac disease - you never know, it could work.

 

If you do think you have a gluten intolerance, I would say that there is a good chance you have celiac disease because you have autoimmune activity on your thyroid woth the positive TPO Ab, and autoimmune problems tend to run in clumps - people who get one AI disease tend to get another. When you go gluten-free, go 100% gluten-free for at least 4 months to see how your body does. Give it a lot of time as some symptoms, like pain, tend to take a long time to go away.

 

Your Free T's are not ideal (I'm not a medical professional though, just someone who has hypothyroidism and has done a lot of reading on the topic).

 

Your Free T3 is below the 30% mark or your lab's normal reference range. That's not very good. FT3 is the active/useable hormone that is in your blood, and it is what keeps your metabolism going.  Yours could be considered a bit low.

 

Your FT4 is in a pretty good spot, at about 65% of your lab's normal reference range. I'm honestly a bit surprised this isn't a bit lower with your high TPO Ab. The T4 is converted into T3 in your organs, and you appear to have enough.

 

Do you feel hypo with dry skin and hair, thinning hair, sluggish digestion and constipation, fatigue, achiness, and feeling cold? You could be slightly, subclinically hypothyroid. If you think it's an issue for you, discuss it with your doctor.

 

Best wishes. I hope you feel well soon.

Thanks for all the helpful info Nicole. I have been trying to go gluten free for a few weeks, but have definitely not been 100%. I'm really disappointed that my doctor didn't do the correct testing when I was there. I am really puzzled by the responses had to the digestive enzymes. Both in the rapid reduction in symptoms when starting them and the rapid increase in symptoms upon stopping them.

Yes, I definitely feel hypo.

[nvsmom]

A lot of the doctors don't know much about gluten sensitivities and they "wing it" so they appear knowledgable... I wish they would just admit that they don't know and look it up!  If you go back to the doctor, you might want to take a list of tests and questions with you so you can get better care, for celiac and Hashimoto's.... And I do think you might as well get the testing done since you are not entirely off gluten yet, but that is a personal choice - there are many around here who have gone gluten-free without going through all the testing, and they heal just as dramatically as the rest of us. 

 

I don't know much about stomach enzymes, but it does make sense that if you are taking supplements to help the digestive process along that you would feel better - it would break down the foods better so (large) particles that should not be getting through a damaged intestine are not and therefore not inducing an inflammatory response to deal with unwanted particles.... But that just my guess, I;m not medically trained at all.