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tigerlily6200

Need Help With Tests Etc

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I started having muscle pain in my legs and joint pain with some swelling in my hands in January.  I saw my family doctor who ran tests first week of February.  Everything came back negative or within range, except an elevated ANA (speckled).  My symptoms were easily controlled with ibuprofen so my family doctor said the Rheumys wouldn't see me without more symptoms etc.  That sent me on a search to a functional medicine doctor.

 

Here is my health history in an abbreviated form:

1. diagnosed with thyroid disease at 18 years old, however showed symptoms years before.  I have hypothyroidism.

2. Developed keratosis pilaris after the birth of my first child

3. Developed scalp psorrasis after the birth of my second child

4. Had joint pain and muscle pain since January

 

The functional medicine doctor ran a celiac panel, an anemia panel, Vitamin D, Sed rate, and CRP.  Here were my abnormal results:

 

Celiac:

Immunoglobulin A, Qn, Serum 432 High

Deamidated Gliadin Abs, IgG 24 High

everything else negative in celiac panel

 

CRP:

C−Reactive Protein, Quant 14.5 High

 

Sed rate was normal and on the lower side.

 

Vitamin D:

Vitamin D, 25−Hydroxy 28.3 Low

 

Anemia panel:

B12 - low

Iron, Serum 31 Low

Iron Saturation 10 Low

 

My doctor called me with these and said that they were very indicitive of celiac disease.  I am already on an elimination diet but she told me that we would not be adding gluten back.  She said it was up to me if I wanted the biopsy to confirm the diagnosis.  I'm really lost here and don't know.  I just want to feel better.

 

 

 

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The DGP IgG is a pretty specific test for celiac disease, which means if you have a positive test then celiac disease is most likely the cause of it. There are more blood tests you could request if you want to be (more) sure of your diagnosis. Here is some information.

 

Those low nutrients are often linked to celiac. they would also point in that direction. If you are taking supplements, you might want to try sublingual ones (B12 and D are easy to find) as celiacs don't absorb the usual swallowed ones as well.

 

My doctor also left it up to me whether I wanted the biopsy or not. I chose not to do it because I had a couple of positive blood tests and symptoms that matched up, as well as other autoimmune diseases. I am happy with my choice.  Others chose to have a biopsy to confirm the diagnosis, check for other problems that could be causing symptoms, or to get a baseline of the damage they have.  You just have to decide what you feel comfortable with.

 

How are your thyroid tests? Many celiac symptoms (like joint pain) also is caused by hashi's so you could be getting hit from both sides if your thyroid isn't ideally managed. From what I understand, hashi patients tend to feel best when their TSH is near a 1, and their Free T4 and Free T3 are in the 50-75% range of their lab's normal reference range.

 

If your pain is caused by celiac disease, prepare to be very very patient for that to resolve. I have joint pain too and I suspected a rheumatic problem but my pain has finally gone - it took a little over 6 months of gluten-free eating for it to go. I'm not certain the eating gluten-free fixed it but I really hope that was the cause.  Hang in there.

 

Best wishes with whatever path you decide to follow.

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Thank you so much for your reply.  I guess I feel as if I need to read a book about celiac's to really learn about it.  I should say that my issues with joint pain I believe are coming from chronic tendonitis- is tendonitis a symptom of celiac?  I'm glad your joint pain finally went away, it gives me hope.  I've been on this elimination diet 13 days and although I feel better, I am still stiff in the morning. 

 

Also I have  3 small children, should they be tested for this?

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Yes, your kids should be tested. Toddlers can have a false negative result though so if a child has symptoms, you might want to consider the gluten-free diet for them.  Also, if your kids do test negative, they should be retested every few years if they are still eating gluten. Celiac disease can express itself at any time so if they are negative now, they might not be in the future.

 

My kids tested negative but had some symptoms of gluten sensitivity so I made them gluten-free. Their symptoms did improve... be aware that NCGI (non-celiac gluten intolerance) does not have any blood tests at this time... a problem considering NCGI is much more common.

 

I think tendonitis is linked to celiac but I'm not sure (I tend to pay closest attention to aspects of the disease that affect me.  LOL ;)

 

There are some really good celiac books out there. My favorite is Dr Green's book but lots are very good.  :) 

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Yes, your kids should be tested. Toddlers can have a false negative result though so if a child has symptoms, you might want to consider the gluten-free diet for them.  Also, if your kids do test negative, they should be retested every few years if they are still eating gluten. Celiac disease can express itself at any time so if they are negative now, they might not be in the future.

 

My kids tested negative but had some symptoms of gluten sensitivity so I made them gluten-free. Their symptoms did improve... be aware that NCGI (non-celiac gluten intolerance) does not have any blood tests at this time... a problem considering NCGI is much more common.

 

I think tendonitis is linked to celiac but I'm not sure (I tend to pay closest attention to aspects of the disease that affect me.  LOL ;)

 

There are some really good celiac books out there. My favorite is Dr Green's book but lots are very good.   :)

 

 

 

Thanks for the replies.  Interestingly enough I had cut gluten out of my diet before this tests and only ate gluten the couple of days before.  So maybe that's even more indication.  I ended up ordering Dr. green's book and another one about having celiac the first year?  I can't remember the name but it's by someone who has celiac's.  Anyway, I am feeling better.  I have some tendonitis issues that I'm working on with a chiropractor and some minor joint stiffness in the morning.  I've been taking 800 mg of ibuprofen 3-4x a day since middle of March so I'm hoping that the longer I'm off gluten I'll have to take less and less.  Time will tell :)

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