Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Is There A Jra/celiac Connection?


HeidiLeigh29

Recommended Posts

HeidiLeigh29 Newbie

Hi,

maybe someone out there has some answers, here it goes:

#1: keep this in mind, my middle child has JRA and is ANA +

#2: my youngest son (6 yo) has had a history of abdnormal bowel movements, severe constipation, needing prescription miralax to help him become more normal. Now he will usually have formed stool sometimes along with loose. (the formed stool is a pale green??) He will usually complain of lower back pain.

#3: my 6 yo also has not gained any weight in a long time. he use to be 75th precentile for his ht and 50th for his weight until this year now he is in 15th-30th precentile. (i think he is actually lower than that) he is 47inches and 42 pounds. This summer you can literally see ever rib and bone in his back. He has a small appetite and will eat very little at a time.

ok here is my question, at his physical the other day the doctor mentioned celiac disease to me, but felt like he hasn't had chronic diarrhea, so he feels like it is unlikely, and he wants to wait 6 months and re weigh him and see where he is at. I'm a little concerned because last summer he was thin, but this year he is so thin it is scaring me and i'm somewhat afraid of waiting another six months to see what happens.

my other thought was is there a connection between JRA and celiac disease? there is some sort of autoimmune thing going on with both and i know that usually JRA isn't common in siblings, but i'm wondering if the ANA+ trait is?

thanks for any input,

Heidi


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



dkmb Newbie

Constipation can be a symptom of celiac disease. The Medline Plus website which is from the NIH states that some have diarrhea, some constipation, some both and some neither. There are also posts to this website from people who have constipation.

I was just talking to a doctor yesterday about celiac disease and told him my granddaughter has it and constipation not diarrhea is a problem with her. He said he would have to do research because that was something he hadn't heard. While he isn't involved in her treatment I was glad he was willing to add to his knowledge.

I hope someone can answer your other questions.

DK

lovegrov Collaborator

Your doctor needs more modern information. Less than 50 percent of people with celiac disease have diarrhea. I didn't have it but my blood tests were sky-high and all of my villi were completely flattened. Classic case of celiac without most of the classic symptoms. Failure to thrive and weight loss, however, are major symptoms in children.

What is JRA and ANA+?

richard

GEF Explorer

"ANA stands for Antinuclear Antibody. This literally means 'substance against the cell nucleus'. The nucleus is the 'headquarters' of the living cell, therefore the ANA can damage or destroy cells & tissues.

95%-98% of patients with SLE (lupus) will have a positive ANA test, but the majority of people with a positive ANA test do not have SLE. A positive ANA test can be found in many conditions, including Sjogren's Syndrome, scleroderma, rheumatoid arthritis, & mixed connective tissue disease. Many normal healthy people will also have a positive ANA test." Open Original Shared Link

gf4life Enthusiast

JRA is juvenile rheumatoid arthritis.

ryebaby0 Enthusiast

Your post gave me chills. Here I go again --- my son was originally dx with jra, and rheumy said that she has patients with celiac and jra and it's certainly linked, but sometimes it turns out that the "jra" is actually untreated celiac disease that has progressed to the point that joints are inflamed. This is especially common in children.

My boy's hands was dx as polyarticulate jra and had hands, wrists, ankles, knees and hip involvement, a prounounced limp and inability to run. He was also ANA+. ALL of those symptoms have completely disappeared by now, his 6.5 month of gluten-free. His rheumy told him in May -- I love you, but go away and don't come back, you don't need me.

As for your youngest -- there is no good pediatrician in this world that can watch a child fall through that many percentiles and not be alarmed. If he had always been small, that would be one thing. We watched my son lose weight until you could see every bone in his vertebrae and his pelvis began to protrude. His arms were like matchsticks; it was the day I mailed a digital photo of him, without a shirt, to his rheumy (3 hours away) that our phone rang. She had called our pediatrician, who until then had said "it takes a while for a gluten-free diet to turn around". He was admitted to the hospital for 7 weeks, and is doing great today. Pale green, I believe, is a sign of malabsorption. Your instincts that something is wrong is probably correct, so stay on the doctors...

HeidiLeigh29 Newbie

thank you ryebaby and everyone.

my middle son with JRA also had polyarticulate, a very rare case his rheumy said. He had only one wrist and one finger affected. He also has been in remission for years and she said he should never have a problem again, but because of the ANA+ trait must continue to have slit lamp eye exams every 3-4 months. but she loves him so much she wants to still follow him with yearly exams, we go to Shriners Hospital, they are wonderful!!

I had already decided this evening that tomorrow morning i'm walking into the doctors office and making them do testing or refer us to a pediatric gastroenterologist. After reading your response it makes me feel even stronger that I am right in doing this.

The other thing that I have been reading a little about is the rash you can sometimes get if you have this disease and it made me think about this past winter..any hand lotion that my son used caused his hands to break out in a very painful red rash immediately after applying....this may be unrelated but it has me wondering?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Kim Explorer

I would absolutely, positively get your children tested for celiac immediately. Why wait (and suffer) 6 months? Make sure your doctor runs all 5 bloodtests, not just 3. You may, or may not, know this, but you won't want to put your children on a gluten free diet until they're finished running diagnostic tests (blood and biopsy). If you post where you are, perhaps someone can recommend a knowledgable pediatric gastroenterologist in your area. Good luck. Kim.

HeidiLeigh29 Newbie

I am in western Massachusetts. I have researched on internet for pediatric gastroenterologists and have found one at Baystate Medical Center named A. Angelides. I am going to doctors this morning to see if they will give me his heights and weights from his physicals, then i'm just going to refer myself to a specialist. (I have this info somewhere here at home, but right now I can't even think about where it may be).

ryebaby0 Enthusiast

Good morning! The red rash with the use of lotions certainly sounds like dermatitis hepa-- hepa-- hepaform? It's a form of celiac; we don't deal with that here but if the lotion is not gluten-free (and it probably isn't) that would be consistent with celiac. There are lots of celiacs with a DH form. Good luck at the doctors! You sound like you are on the way to answers :)

lovegrov Collaborator

I dealt with DH for more than 20 years and a painful rash on your hands with use of lotion does NOT sound like DH. DH is itchy but not painful (at least in my case), and the hands are not a place where you usually get it, except sometimes on the back of the fingers. Elbows, knees, buttocks and sometimes the scalp are the most commopn places for DH. Does he have blisters filled with clear fluid? That's DH.

In addition, I never got it from touching something with gluten. Most if not all experts agree that, just like with celiac, you have to swallow the gluten for a reaction. Your son might be allergic to gluten or some other ingredient, but it's probably not DH, at least it doesn't seem like it from the description you gave.

richard

HeidiLeigh29 Newbie

OK,

I went to my son's pedi today and told them that I want him tested. His primary doc is on vaca for 1 1/2 weeks, they want me to wait until he comes back. I agreed to that. So we will have to wait and see. I also called the pedi GI in Springfield and they said that I would need a referral. So I guess I have no choice but to wait and see.

thank you all for your helpful input.

heidi

gf4life Enthusiast

Actually you can get DH on your hands. I had it on my palms very badly and it was extremely painful. I think because there are so many nerve endings on the hand that it was more painful, and it was extremely itchy as well. I also had it between my fingers and in places running up my arms and on my scalp and neck. I only had a few on my back and none ever on my legs or belly. The palms of your hands is not the most common place to get DH, but it can happen. Once I was able to be completely gluten-free, it took over a month before the pain went away, and then for month or so after that I would occasionally have shooting pain where the DH blisters used to be on my palms.

But if this is what your son had it would not just happen from the lotion, it would be the entire time he was consuming gluten. He may have just been allergic to something in the lotion.

God bless,

Mariann

Niteyx13 Explorer

I always have to say first that I am undiagnosed, because I do not want to mis-lead anyone. Although, I am absolutely positive that I have celiac disease.

I was diagnosed with JRA at age two. I grew slowly...I was still under 5 foot, around 90 pounds, and without a period until 15 years old. Constipation started for me in highschool, getting progressively worse. I have two children now, and my major symptoms started when I was pregnant with my first, that was when i was diagnosed hypo-thyroid.

The more I am on this board the more sure I am about this whole thing. Definately insist on your son being tested. I am going to have to do the same fo rmy daughter, because she is showing some of the same signs.

debmidge Rising Star

Please let us know what the results of the tests are...

Not only can children get skeletal, but my husband is too due to 25 yeas of mis diagnosed celiac. Since he started gluten-free diet in Oct 03 he has only gained back 1.5 lbs. I can do that in a day!

His sister refuses to get tested, yet she too is painfully thin and has had RA for years. I tried to explain the RA=celiac connection, but she doesn't believe me.

LUAP Newbie

ACCORDING TO RESEARCH I DID, THERE WOULD NOT BE LINK BETWEEN RA AND COELIAC DISEASE. THERE IS A COMMON FACTOR : BOTH ARE AUTO-IMMUNE DISEASE AND BOTH WOULD CONTAIN FOOD ALLERGY. THE VIRUS WOULDN'T BE THE SAME.

Open Original Shared Link

IT'S IMPORTANT TO CONSIDER IT BECAUSE THE REMEDYS THAN, ARE NOT THE SAME.

PAUL

  • 4 years later...
kapoorpriya Newbie

Heidi

My 3 yr old son was recently diagonsed with polyarticular JRA. He is 9 joints affected. He also suffers from severe constipation. Now the doctors are rethinking the diagnoses and would like to confirm he is indeed has an inflamatory bowel disease. I was wondering what ended up being the case with your yonger son.

Thanks

Priya

kapoorpriya Newbie

Hi - my son was recently diagnosed with polyarticular JRA. He has 9 joings in his body completely inflammed at the moment. Doctors now want to check him for any inflammatory bowel disease. I have decided to put him on a gluten free/diary free diet before doing any more invasive procedures on him. I was wondering why your son lost so much weight when he started on the gluten free diet. Or maybe I misunderstood why your son lost so much weight.

Any guidance on that front would be appreciated. Was your son diagonsed with celiac or JRA?

Thanks

Priya

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,553
    • Most Online (within 30 mins)
      7,748

    Jennifer CCC
    Newest Member
    Jennifer CCC
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.