Celiac And Other Auto-Immune Diseases

[Gluten Glutton]

Hi everyone,

I'm self-diagnosed as gluten-intolerant but am pretty sure I have full-blown celiac based on my symptoms. I was never tested because I stopped eating gluten as a "let's see what happens" and couldn't bring myself to go back after many positive, drastic changes took place. My issues flared up very badly right after a couple of stressful years. One of the most stressful things that occurred was that our then two-year-old son Jackson was hospitalized for Kawasaki Disease, which is another auto-immune disease of as-of-yet unknown origin. He was treated and discharged with no complications. That was about 18 months ago.

A few months before it happened, Jackson had to have his four top front teeth removed due to decay. We have two older boys as well and had not seen this type of unexplained decay before. Now I'm starting to wonder if this was the beginning of an autoimmune problem for him. In the last few week, Jack has had a constant runny nose, an intermittent sore stomach, lots of gas, and less of an appetite than he used to (although he's still eating). He sometimes complains of pain in his legs and arms, or a headache. He's moodier, more anxious and more tired than usual.

When I went gluten-free in October 2010, we took all the kids off gluten as well for about a month to see if there were any major changes. There were none - but they never had symptoms to begin with - so we started feeding them a typical diet again. It's only since then that Jack has started having these symptoms.

So, my questions are:

1. Does anyone have experience with TWO or more autoimmune diseases in their kids or in themselves? My research so far says this often happens, but I'd like to hear some firsthand experiences

2. Could removing gluten from his diet and re-intorducing it bring on these symptoms?

We're obviously going to get him tested (I won't make the same mistake twice - I think I should have been tested first, too!), but I'm just looking for information/support as we go through this.

Thank you!

Amanda

[mushroom]

Welcome to the board, Gluten Glutton.

So sorry to hear about your little fellow having so many problems. Yes other autoimmune diseases often travel in tandem with celiac. Although I am self-diagnosed, I have autoimmune psoriatic arthritis (both of which individually are autoimmune).. Many, many posters here have one or more additional autoimmune diseases from Hashimoto's thyroiditis to lupus and AI diabetes, as well as some of the more obscure ones like Kawasaki disease (we just had two other posters this week with children with KD). Dental decay is a major symptom of celiac as you probably know.

Yes, it is quite common if you resume eating gluten after having been gluten free that your symptoms will be worse than before. This is the reason so many people do not go for the diagnosis once they find gluten free helps them, because it is just too painful to resume eating gluten. Some last a couple of weeks and then just give up, so your son's reaction is not unusual. I agree it would be worth sticking it out for another few weeks so that he can get a meaningful test because he sounds like he has plenty of problems with gluten and may well test positive, although small children have a higher error rate than adults. Since you have been glutening him for about six weeks already, you need to wait at least until two months, some say three, for the tests to be accurate. Do you have a good Ped. GI in your area? One who is familiar with celiac disease? Because some doctors are woefully underinformed.

[Marlie]

My daughter, who is a teen, was just diagnosed this month both by blood testing and biopsy for Celiac Disease. Fourteen months ago she developed a bald spot at the crown of her scalp. The dermatologist diagnosed it is Alopecia (an autoimmune disease) but not via labs or biopsy. The hair started growing back a few months later.

Hi everyone,

I'm self-diagnosed as gluten-intolerant but am pretty sure I have full-blown celiac based on my symptoms. I was never tested because I stopped eating gluten as a "let's see what happens" and couldn't bring myself to go back after many positive, drastic changes took place. My issues flared up very badly right after a couple of stressful years. One of the most stressful things that occurred was that our then two-year-old son Jackson was hospitalized for Kawasaki Disease, which is another auto-immune disease of as-of-yet unknown origin. He was treated and discharged with no complications. That was about 18 months ago.

A few months before it happened, Jackson had to have his four top front teeth removed due to decay. We have two older boys as well and had not seen this type of unexplained decay before. Now I'm starting to wonder if this was the beginning of an autoimmune problem for him. In the last few week, Jack has had a constant runny nose, an intermittent sore stomach, lots of gas, and less of an appetite than he used to (although he's still eating). He sometimes complains of pain in his legs and arms, or a headache. He's moodier, more anxious and more tired than usual.

When I went gluten-free in October 2010, we took all the kids off gluten as well for about a month to see if there were any major changes. There were none - but they never had symptoms to begin with - so we started feeding them a typical diet again. It's only since then that Jack has started having these symptoms.

So, my questions are:

1. Does anyone have experience with TWO or more autoimmune diseases in their kids or in themselves? My research so far says this often happens, but I'd like to hear some firsthand experiences

2. Could removing gluten from his diet and re-intorducing it bring on these symptoms?

We're obviously going to get him tested (I won't make the same mistake twice - I think I should have been tested first, too!), but I'm just looking for information/support as we go through this.

Thank you!

Amanda

[suzyq63]

We're dealing with two autoimmune diseases so far. Alison was diagnosed with Type 1 diabetes in January, 2008, and immediately started losing weight after diagnosis. She was screened for celiac, but only had a high IgG antigliadin antibodies; other tests were negative. She was screened every 6 months and the numbers started climbing. She was finally diagnosed with celiac (by biopsy) in August 2010. She deals with other non-autoimmune issues, so I really hope we're done with any more diseases!

Paula

[Gluten Glutton]

Thanks so much for the replies! It's good to get feedback from people in the know.

I find it incredibly frustrating when I'm met with doubt from friends and family on this issue. It's apparent to everyone in my support circle what a turnaround has taken place in my physical and mental health since going gluten-free. Yet, I've been told twice now that I shouldn't "jump the gun" when it comes to my sons' medical issues and that I can't "blame everything on gluten." Um, I not blaming everything on gluten, nor do I consider it the holy grail of all health troubles. But since gluten-intolerance and celiac have a genetic link, does it not make sense that if my kids are showing symptoms we should have them tested? Is it not a very likely cause of said symptoms? And is there not a strong link between auto-immune disorders? It doesn't take a lot of searching to find solid medical evidence that this is the case.

Anyway, I'm totally ranting. Sorry

On top of four-year-old's issues, we also have an eight-year-old who has extreme anxiety (and I mean extreme) and recurrent pneumonia (7 or 8 confirmed and treated cases in his life including one hospitalization, with no underlying cause found). He gets a cold and it often turns into pneumonia. We don't know why, but now I'm starting to suspect an all-too-familiar culprit.

In short: blood tests all around, a referral to a GI specialist (thanks, Mushroom - I'll do my research and find someone good), a gluten-free diet if positive and at the very least a gluten-restricted diet if negative. I'm putting all the puzzle pieces together and starting to see a potentially much bigger picture than I realized!

[teresasupermom]

Thought I'd add my family. I don't have any one child with two autoimmune disorders, but we have a bunch of them here. I have 7 kids - two of them have type 1 diabetes, one has celiac, and another has hashimotos thyroiditis.

[potatopeelingmom]

Hi everyone,

I'm self-diagnosed as gluten-intolerant but am pretty sure I have full-blown celiac based on my symptoms. I was never tested because I stopped eating gluten as a "let's see what happens" and couldn't bring myself to go back after many positive, drastic changes took place. My issues flared up very badly right after a couple of stressful years. One of the most stressful things that occurred was that our then two-year-old son Jackson was hospitalized for Kawasaki Disease, which is another auto-immune disease of as-of-yet unknown origin. He was treated and discharged with no complications. That was about 18 months ago.

A few months before it happened, Jackson had to have his four top front teeth removed due to decay. We have two older boys as well and had not seen this type of unexplained decay before. Now I'm starting to wonder if this was the beginning of an autoimmune problem for him. In the last few week, Jack has had a constant runny nose, an intermittent sore stomach, lots of gas, and less of an appetite than he used to (although he's still eating). He sometimes complains of pain in his legs and arms, or a headache. He's moodier, more anxious and more tired than usual.

When I went gluten-free in October 2010, we took all the kids off gluten as well for about a month to see if there were any major changes. There were none - but they never had symptoms to begin with - so we started feeding them a typical diet again. It's only since then that Jack has started having these symptoms.

So, my questions are:

1. Does anyone have experience with TWO or more autoimmune diseases in their kids or in themselves? My research so far says this often happens, but I'd like to hear some firsthand experiences

2. Could removing gluten from his diet and re-intorducing it bring on these symptoms?

We're obviously going to get him tested (I won't make the same mistake twice - I think I should have been tested first, too!), but I'm just looking for information/support as we go through this.

Thank you!

Amanda

Hi Amanda,

I've just joined the forum. Your post totally caught my attention. I completely believe that your son and possibly yourself have Celiac.

I will try to tell you my story quickly as it is long.... I was diagnosed with Ulcerative Colitis, when I was 17 many years ago. I ended up having my large intestine removed in my early 30's. Fast forward to 14 years later. I have one son, who I have observed for possible gut symptoms due to my history. At about 9 years of age, he started to develop gut symptoms. We thought he was allergic to milk, so we eliminated milk in the household. Symptoms improved, but not perfect. Then, when he was 10, suddenly classic Kawasaki Disease. He was very sick. Although he was classic, it took 4 Dr.s and much persistence to finally have him diagnosed and treated. Thankfully, he has no heart aneurysms. But after a few months, his gut symptoms were continuing, until finally his gut had enough and he developed non-stop pain, diarrhea and would not eat. During this time he suddenly had anaphylaxis to soy and was admitted to emerg. The Dr. in emerg listened to me about his other symptoms and finally booked him to see a GI specialist. He has definite Celiac. Him and I both went gluten-free and within days he was feeling much better. I feel much better on the diet too. I imagine its what I had all along and most likely it lead to me developing Ulcerative Colitis. We did not actually do the blood tests first as we started the diet first, but looking at my son's health history, his Dr. is 100% sure he has the disease. He will remain gluten-free for life. He does not ever want to go thru anything like the Kawasaki's again.

Best wishes for you and your family.

Monica

[laurie.bar]

Hello,

Maybe my post can help you. My son was diagnosed with Kawasaki disease 4 times?? Well what resembles Kawasaki, I am sure one or two of them were kawasaki the rest we are starting to realize is actually an autoimmune disorder that has not yet been diagnosed. However, he is positive as his brother with celiac disease. So I would definately say from reading other parents posts and my experience that celiac and kawasaki are somehow linked.

Good luck and hope you have or will find the problem!

[mommida]

I've been on this site for a while and Kawasaki comes up quite a bit. I believe there is a link.

My daughter has Celiac and Eosinophilic Esophagitus.

[shayre]

I'm still keeping an eye on my children, but their tests for celiac disease were negative too. I'm not sure that I believe that. However if this helps...I have been "unofficially" diagnosed with celiac disease in the past 2 yrs. Before that...Hashimoto's Thyroid. I am now perceived as having RA and possibly Lupus. Yes, there is a definite link to autoimmune issues. Much research indicates that undiagnosed celiac disease can open the doors for other AI diseases...like in my case probably. I said this under someone else's post too...2 of my specialist docs said that my genetic tests that were positive (very high risk) for celiac disease genes really meant that those people are just prone to AI diseases...however they decide to manifest themselves...either as celiac disease or other AI issues. I guess that makes sense to me. Maybe some genetic testing might help?

[nmlove]

I have two sons with celiac. However, it's my oldest that is "funny" with autoimmune issues. While he has yet to be diagnosed with another autoimmune disease other than celiac, prior to diagnosis he did get sick with a fungal infection that is very common to our area but typically only affects those with immune issues (think HIV, cancer patients). So that was weird. Lately he's been having some weird moments - nothing too many people would think much about but where mommy instincts kick in - of night sweating, occasionally peeing through his pull-up (he's six but still pees a lot at night) and just looking off. I've talked about it with his ped who warned me of T1 diabetes while saying that doesn't mean he'll get it. Since that talk I've noticed the symptoms come on just before he gets sick and while he's recovering. Our worries over our children will never go away. Good luck!