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greenbeanie

Juvenile Rheumatoid Arthritis, Ttg, And Esr?

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Does anyone have experience with a child who has both celiac and juvenile rheumatoid arthritis? I'm wondering specifically about how/whether the arthritis can affect tTG-IgA levels. I know that other autoimmune diseases can cause a mildly elevated tTG, though most of the things I've read talk about type 1 diabetes and thyroid disease rather than RA. But I did find a few articles, including the one below, that show an association between RA and tTG (but in adults, not children).

http://www.clinchem.org/content/49/12/2091.full

We are waiting to see a pediatric celiac specialist because my daughter's tTG still hasn't dropped all the way after a very strict gluten-free diet for almost two years. Meanwhile, I finally got her current doctor to take the possibility of other autoimmune disease seriously and order some tests. Her ESR came back high, though CRP is normal. I wouldn't be too surprised if celiac alone might cause that, and it isn't alarmingly high, but I think it's about 3x normal. Since she was a toddler she has had joint pains that were severe enough that she couldn't walk at times. We were told that it was toxic synovitis, and that some kids were just prone to it. But the joint pains almost totally went away after her celiac diagnosis, so it's clear to me that there's some association. The joint pains have returned intermittently in the past few months. Anyway, juvenile rheumatoid arthritis would fit.

I'm sure they will now do additional follow-up once the throid tests and other results come back too. But meanwhile, if anyone has experience with rheumatoid arthritis confounding tTG results, I'd be happy to hear it! (It would actually be good news because I'd stop driving myself crazy trying to find hidden gluten that we missed.)


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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I don't have RA as far as I know (negative RF) but I have had a lot of arthritis.  I am almost 3 years gluten-free and my flare-up arthritis in my shoulders, elbows, and hands is mostly gone now - it slowly became less severe, less frequent, and of shorter duration after the first 9 months gluten-free whic also (sort of) corresponds to when I began a the best thyroid treatment for me. 

 

I also have a lot of stady arthritis in my hip, it does get worse and better, but it doesn't seem autoimmune in nature.  My knee arthritis is definately OA.

 

Anyway, parts of my arthritis has really improved with the gluten-free diet but it took around a year before I started to see improvements.  My tTG IgA also stayed elevated for the first 9 months.  My last test (at close to a  year) was barely above positive whereas when I first diagnosed, it was essentially off the charts.  I was taking corticosteroids at the time, which can lower tTG test results, so I don't know if that was afactor in lowering it.  I haven't had it checked since then.

 

I also have Hashimoto's and another AI disease, so that could be par of the reason my ttG stayed elevated.

 

I'm afraid I don't know much about RA causing positive tTG tests.  I know other diseases can, and even things like Lyme can do it.  If she is still having problems, and her tTG is still high, it's probably wise to look into other causes.

 

Hugs and good luck. I hope you find anwers, and that the answer is not J-RA.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I will start with we don't deal with JRA- we have a lot of other issues here but not that.

 

I would ask a few questions first.  What were her initial labs?  How long has she been gluten-free?  Have her labs been drawn at the same place?  

 

We have had consistently high levels after 5 years gluten-free.  We are VERY strict (calling manufacturers, only food from home, vetting all art supplies at school because my DS also has 4 life threatening food allergies).  We got the gluten test strips. We went to Boston to see "The" Celiac expert and you know what?  No one has any answers for us.  It is maddening and so frustrating but I could not drive myself crazy any longer so I stopped.  We have labs that are positive but we have an asymptomatic kid who is (for the most part) "normal" ;)  

 

Hugs. It's not easy or fun :(

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Basically, our current GI has only been willing to order tTG for follow-up. In the past two years she's only had vitamin D and ferritin tested once at diagnosis, and TSH once. He ran the DGP tests once after I'd asked many times, and they were negative, despite a continued low-positive tTG. No thyroid panel, systematic vitamin and mineral tests, no checks for other autoimmune diseases that can affect tTG, etc. Suddenly he did agree to run more tests now - after I told him we were going for a second opinion. I've posted more about her labs in another thread: https://www.celiac.com/forums/topic/111166-daughters-ttg-suddenly-doubled/

If she had no remaining symptoms at all, I wouldn't necessarily be concerned about the continued low-positive tTG. But she does have some symptoms, including a return of joint pains and sleep difficulties. Things are much, much better than they were when she was first diagnosed! But she's a growing kid, so if there's something else going on in addition to celiac, we want to catch it sooner rather than later.


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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Has she been checked for Lyme disease?  A woman I know who did the Biocard home test (for tTG IgA) had a positive home test and then was retested by her doctor and came up with a negative result.  She then went to a naturopath who discovered that she had Lyme disease, which is surprising because there aren't many ticks around here.  She was treated for Lyme and has felt much better - she had no idead that she had been bitten.

 

It could be something to check into, along with the diabetes, and maybe the TSH free T4, free T3 and TPO Ab for thyroiditis... if your doctor will listen.

 

Keep in mind that it could still be celiac disease.  There have been a few board members, including me, who had issues (like joint pain) that lasted a few years into the gluten-free diet.  I am mostly better but it comes back - today my pointer fingers feel like they are out of the joint a bit - yet it appears to be celiac disease.  Unfortunately, most of us who had lingering problems tend to have more than one autoimmune disease so it is hard to be certain what causes what.

 

Hang in there.  Hug. Your persistance on behalf of your little one is admirable.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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I would get a second opinion at the very least. Sometimes a new set of eyes can really help and it seems as if your Dr. has a bit of an "infallible" complex if they weren't taking your concerns seriously till they were made aware of your plans for a second opinion.  

 

I'm sorry.  It is so hard when they are young and you are trying your best to be a strong advocate for them and everyone it telling you not to worry.  Hang in there.

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Thank you both. The Lyme idea is interesting - I'll definitely ask about that. We do live in an area where Lyme-carrying ticks are common.

I am super glad that we're getting a second opinion. Even if the new doctor doesn't actually have any additional ideas, at least I think we're already on our way to ruling out (or in) other associated problems, just based on our current GI's sudden willingness to look into things further.


Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosed by GI with "presumed celiac" based on health history, celiac in family, and resolution of fat malabsorption and many other symptoms on gluten-free diet. Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Negative celiac tests after 15 years gluten-light and then a brief but awful gluten challenge. 

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