My Son Had Kd And Now Being Seen For Possible Celiac Disease - Anyone Else?

[Michelle L.]

Hello

I just found this site after doing a lot of research this weekend. My son had Kawasaki Disease in June of 2004. he's almost 8 now, and we've had ongoing issues since his initial ordeal. The biggest concern being he's not been able to gain much weight since then, has stomach aches frequently, loose stools 90% of the time, earaches, eczema, dental issues, etc. etc. etc. Chase only weigh's 47 pounds. We have another cardiology appoinment Monday so I started doing more searching so that I could see if anything was new. The Kawasaki Disease Foundation website had an article with a link between KD and Celiad Disease. The more research I do - the more I see this in my son!

Does anyone else have a child with Celiac Disease who is a Kawasaki Disease child? Can you give me any more information or suggestions on what to ask the doctor about on Monday? Will the cardiologist refer us to a dietitian or does he have to see a GI doctor if this is what's going on? We live in Winston-Salem and go to Brenner's Children's Hospital at Wake Forest. They are usually pretty good about looking into things if there is justification. I'd like to go in with the facts.

Thank you!

Michelle

[2kids4me]

That would be us too! Kathryn had KD in 2003 and was diagnosed celiac in 2004. The cause of Kd , as you know - is not well understood - we sent her DNA to Dr Burns (in California) who was doing research into genetics of KD.

Kathryn took a loooong time to recover - she wasnt diagnosed in time to give IVIG and was on aspirin for 6 months until the coronary arteries returned to normal. Fatigue (severe), joint pains, episodes of pallor invaded our life for months... I used to check on her in the middle of the night... scary disease! Kathryn was 10 and considered atypical because of her age - had a pediatrician who took one look and referred to the hospital (after 3 visits to GP who said it was a virus).

Stomach aches and migraines started about 4 months after the KD, at first we thought maybe the aspirin was causing problems ... but then why migraines and backaches along with the stomach aches? Anyway - it was investigated and after blood work was borderline - an endoscopy was performed which was clear cut for celiac. The cardiologist even came and talked with the anesthesiologist before the procedure as I was a little freaked out about anesthesia in a post KD child...... and no problems, I found out afterwards the anesthesiologist was the one who asked for the consult with cardiology. I was pleased that they actually read the chart!

That was 2 years ago and now they have better blood tests available so an endoscopy may not be needed. Heck you could even ask to see the GI if you can go gluten free and observe response to diet.

The GI doc should see your son for a consult. Mention your concern re: celiac to the cardiologist and bring any pertinent material with you to help show why you are concerned. ( print the material from the KD site).

How bad was the damage from KD? I hope he is doing well and echos are looking good.

[Michelle L.]

Chase was also considered "atypical" because he was 5, almost 6, and never peeled. He had everthing else though. His left eye even had a visible blood clot in it. He had a high fever for several days; horrible rash through the groin, upper legs, and stomach; red swollen strawberry tongue; red lips; red palms; very lethargic for days; etc. His diagnosis finally came on day 11. I had just left the pediatrician for the third time in a week. She decided to draw a complete lab on him because she was so baffled by that point. On my way home she called the cell and told me to go straigh to Lutheran Hospital - they would be waiting on him. As you know they typically don't do IVIG if it's after day 10 because by then the aneurysms are beginning to form and it doesn't do much good - but they did on him. He spent 2 days in Lutheran Hospital in their PICU. Within 6 hours of the IVIG we could already see improvements. The only true heart problem that we've seen since then is he now has an unexplained murmer. I believe this is our last "yearly" check up. After this it's every three years - or at least that's what they told us last time we were there. His other secondary issues are the weight loss, upset stomach, chronic loose stools, ear aches, hyperactive behaviors (which may be a boy thing), and horrible teeth. He is constantly hungry, too. We've put him on a high fat diet per the pediatrician back in February as well as put him back on whole milk, both with no results. He also is suffering from joint instability. His elbows and shoulders are hypermobile (will bend in any direction) and they often dislocate. We've been told this is from his small body frame.

As for the Celiac - it fits him to a T and no doctor has ever mentioned it. We've been dealing with this since shortly after his KD diagnosis. My Dad was here from out of town recently and made a comment that "he's starting to look like a child from Ethiopia". That's part of the reason I wanted to start doing more research before our appointment on Monday.

I'll take a copy of the Oxford University article with me as well as the printout from the website on symtpoms of Celiac. To me it looks like a no brainer!

I have 4 children - how do I adjust Chase's diet, but not the others? How do I keep him from "cheating"? If he does "cheat" on the diet, do you know it? If I wouldn't have found this information and we'd have kept searching for answers - could serious damage have been done to him?

Thank you!

Michelle L.

[2kids4me]

Kathryn was diagnosed after 3 weeks, she had a fever for 11 days, rashes, fatigue, peeling feet, all her lymph nodes were enlarged and tender..... all the classic symptoms....

I'll try to answer your questions the best I can.. and the symptoms do fit celiac and I think what happens is KD is the trigger for the celiac to "declare itself" (IMHO)

Work with a dietician and with Chase. He is old enough to understand celiac of you explain it - as your body gets really sick when you eat some foods and that is why you feel crappy a lot of times.

I woudnt put all the children on the diet as they may resent it... you will find that it is initially overwhelming and gluten-free foods (the breads , rice pasta are more expensive thsn the wheat counterparts).

Make a list of his favorite foods and if they arent already gluten-free, make sure you have the equivalents on hand.

Many main meals dont have to be much different - potatoe, rice, veges are naturally gluten-free. Pasta - the brown rice pasta is a favorite and tastes almost like the wheat variety... with pasta - that is one meal where everyone should eat gluten-free - the chance of cross contamination is too high. my kids like it with Ragu sauce, most of Ragu sauces are gluten-free.

Once you get a diagnosis, starta new thread and support wll come from all sides with neat suggestions about food and coping with it all.

The best gift of all will be - if it is celiac and you go gluten-free - the changes in Chase will be remarkable.

Cheating - deal with it as it happens - its normal to crave something that you miss or that has been denied by a special diet. Hug him and let him know its okay and normal to cheat on the diet - it is the celiac who pays the price for cheating. My daughter snuck a gluten sandwich once, in the first weeks after we went gluten-free - she got so sicktand she knew it was from the sandwich - she has never done it again.

The long term effects on undiagnosed celiac is short stature, poor nutrition (they cant absorb nutrients from food), feeling crappy most of the time....

[Nancym]

Wow! Sorry to hear your kids had KD. I saw that one on "Mystery Diagnosis". I guess you have to be very lucky to get it diagnosed in time for the IG.

[2kids4me]

Wow! Sorry to hear your kids had KD. I saw that one on "Mystery Diagnosis". I guess you have to be very lucky to get it diagnosed in time for the IG.

Lucky would be one word... it amazes me how some hospitals are aware of it and it is on the list of rule outs for fevers right from the start......and satff at other hospitals look at you and say - wow that's rare, how did they know? Simple, it was on the list of potential diagnoses from the start ( too bad the "start" was 2 weeks after the fever began! and the GP didnt know about it)and they ran the correct tests (CBC, ESR) in the first 5 days ..not 2 weeks later after the mom researchs it, asks about it etc.

What makes a good doctor (vet or human)...

one is that they listen to the patient - ven animals can tell you something with behavior - if you are observant

if they dont know, they say so and consult with a collegue or pull out a book, or refer the patient..

to remember that not all patients "read the book"...animals or people do not always have the classic symptoms, every being is an individual, each reacts to drugs differently.

I wish I had gone to the hospital first - the Chidlrens hospital near us treats KD kids each year and they are awre of it. It is where we had the followup care

[Michelle L.]

What state were you in for your KD diagnosis? We were in Indiana at the time. Just was curious.

I use the word "blessed" quite frequently. We were very blessed to have a physician who believed in our gut instinct. It took 3 trips to her office, but she was non stop looking for answers and she finally found it. We were also very blessed that the IVIG took first try on day 11. We were blessed that there were few cardiac implications. His coronary artery was just beginning to show signs of distress. My Mom passed away the year before Chase had KD. She was his angel during those days.

Michelle L.

[2kids4me]

We live in Alberta, Canada in small town. The GP her treated her for Urinary tract infection even though urine was normal - he said you can have infections with a normal urine (??). When the fever never stopped and she was getting sicker - he did a referral only because I asked - he then said it was viral and I was looking for some cureall. I got in 5 days later and the pediatrician (who is very smart) took one look and KD was one of her first rule outs, she said if it wasnt that then coxsackie and some other viruses could cause the symptoms we were seeing.

We have an angel that sits on Kathryn's shoulder - depsite the long time between symptoms and diagnosis - her coronary arteries were only swollen a bit and the fusiform aneurysm resolved.

We were told when she was 2 1/2 that she likely had SMA (Spinal muscular atrophy) based on muscle biopsy and her not walking - the genetic test proved that to be wrong (Thank goodness)

The angel on her shoulder protected her whne she stepped out on the road in front of a car and didnt get hit! She has Aspergers so her judgement is not the greatest.

[laurie.bar]

Hi everyone,

My son Adam had "Kawasaki disease" three times, which is strange. I don't really understand his case, he had been sick on and off since birth. Now they have diagnosed him with Celiac disease confirmed with blood tests and intestinal biopsies. He has many autoantibodies positive such as ANA, Anti-Dna and Anti-Histone. The doctors aren't sure and decided to say that it is maybe related to celiac disease. I am worried about him. I found speaking to other mothers and fathers is the best since maybe someone has had a proper diagnosis. If anyone else has had something similar please let me know.

Thanks

Laurie

[joeysmommy]

I have read in many places that a person can live for years with out ever having symptoms of celiac disease and then after an illness sever stress, childbirth and other hormone changes they all of a sudden they start having problems. Thats why other family members need to be test repeatedly.

[sarahbella636]

My 3-year-old daughter had Kawasaki Disease this past June (had IVIG treatment on Day 4, thank goodness). I am finding this thread so interesting since my 19-month-old son is now in the process of being tested for Celiac and I am learning more about the relationship between of all of these autoimmune issues. I plan on having my daughter tested for Celiac since the last time she was tested, at one year old, her bloodwork came back with a low IGA serum. I was just told about this when the pediatrician was comparing her results with my son's.

If I'm reading things correctly, I'm assuming that there can be a link between Celiac, Kawasaki, low IGA levels, and food allergies (she's allergic to dairy, eggs, and peanuts)? This would explain so much!

[Gluten Glutton]

Thanks so much for this topic. I'm glad to have found it

Our now four-year-old son had Kawasaki Disease in August 2009 and was treated on day 6 with IVIG. He's had no lasting complications and his heart looks good (thank goodness!). However, he's now showing symptoms of celiac, so we're going to have him tested ASAP. I may also have celiac - and at the very least have a severe gluten intolerance - but went gluten-free as an experiment three months ago and refuse to start eating it again just to get tested. That being said, now I wish I had, for his sake.

The correlation between KD and celiac disease makes a lot of sense. A few months before my son got KD, we had to have his four top front teeth surgically removed due to extreme decay. His older brothers have great teeth, so this was very surprising. At the time, we couldn't figure out what was causing it. Now I'm starting to suspect celiac as the culprit. I had perfect teeth until I was in my mid-20's - not a single cavity - and now my mouth is practically all fillings. I'm really hoping he doesn't have celiac disease, but my instincts tell me he does.

[potatopeelingmom]

Hi

I have a son who has had KD one and 1/2 years ago. He was 10. Very typical with all the signs and symptoms. It took 3 pediatricians and one GP to diagnose. The final Pediatrician was the most suspicious and spent more time organizing bloodwork and considering what the symptoms were. We were rushed to emerg on day 10 finally. Treated with IVIG and HD aspirin. No heart changes, thank goodness. But symptoms of Celiac were there all along. During the hospitalization, we spoke to the Dr. of what we suspected were food allergies.

Post hospitalization for KD, was a trying time. My son was exhausted and weak. He experienced joint pain constantly, also wheezing and hives, which then became anaphylaxis X 2. The second time we met an amazing Dr. who believed us about the food allergies and pointed out to me that we may not receive diagnosis from the conventional medical system. However, she finally booked him to a GI specialist, which is turn was booked for 3 months later. In the meantime, my son had such bad abdomenal pain, that he stopped eating. I was desperate... so we tried gluten-free. He was feeling better within 3 days. In 3 months, we kept notes and presented them to the GI specialist. He agreed that I had diagnosed my son and that he indeed has Celiac Disease.

Since then, we have remained dairy and gluten-free, but recently we went soy free. The hives and wheezing have stopped completely.

Please post again if you are still on this forum...to let us know how your children are years later after a diagnosis of KD following with Celiac.

Monica

[Kim miller]

My daughter is 23 years old now and was just diagnosed with Celiac Disease after 23 years of stomach, skin and a list of other issues.  She had Kiawasaki Disease when she was 6 after playing on the carpet in my classroom.  Head to to body rash, strawberry tongue, joint pain, bloodshot eyes, spiking fever from 104 to 106.3, vomiting, peeling hands and feet for 12 days.  After several trips to her GP saying it was a virus and the emergency room, she was admitted to the hospital and diagnosed with KD.  She went through the aspirin and gamma goblin treatment.  Thankfully her followup cardio testing came out fine.  23 years later we can absolutely see the connection to gluten and her health issues from birth.  She had colic, chronic infections from age 1 1/2 that would not respond to tubes so she was on daily antibiotics for 5 years, then we as a family went on a health kick when she was five and started eating whole wheat everything and a year later she got KD.  Then 3 years later she and my husband both were diagnosed with dermatographism (hives that appear on or under the skin when you get overheated through exercise, hot showers, or when your skin is scratched or rubbed).  We were told there was no known cause, only treatment is daily Claritin for life to calm inflammation in their bodies.  Her second year of college after multiple trips to gastroenterologist, neurologist, etc. we took her to Mayo Clinic for 2 wks to get to the root of the wide variety of health issues she having.  I was convinced by this point that it was gluten, because after 7 yrs of diarrhea myself, and being diagnosed with osteoporosis at 48,  going gluten-free made it stop in 3 days. My husband too went gluten-free and his dermatographism and epiditomitis stopped in less than a week which he'd had for over a decade.  But I couldn't convince my daughter  and Mayo didn't think she had it because she had constipation not diarrhea and they thought she had been gene tested for DQ2 and DQ8 when she had not.  We now know she has DQ2 and I have DQ8.  Finally this past year, she began the diarrhea for 7 mo. and the antibodies showed up in her blood work.  So she went gluten-free and diarrhea was gone first week and followup bloodwork 5 mo later showed that the antibodies were gone.  I read a research study (see below) from Italy that kids with KD should be followed for possible Celiac Disease.  But I doubt any of the doctors in the US are even aware of it.  I may start my own campaign and send the article with a letter about my experience to Mayo and all the gastroenterologist associations out there.  We have to speak up to help others .   I am so passionate about this.   I've always wondered if John Travolta's son, Jett, who had KD and as a teenager died  from a seizure allegedly related to autism was ever checked for celiac disease... 

 

Research study on Kiawasaki Disease and Celiac Disease:

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[wanting to feel good again]

My daughter was diagnosed with Kawasaki right before her 2nd birthday. It was the most trying and terrifying time I have ever experienced. She started out with a fever and double ear infection, but she continued to go down hill quickly. She had pink, swollen eyes, vomiting, diarrhea, belly pain, rash, swollen cracked lips, elevated platelets and inflammation markers, joint pain, extremely high fever and extremely irritability and lethargy. We were in the pediatrician's office almost everyday that week and after finally being diagnosed on day 7 we were sent straight to a children's hospital nearby. She was treated with IVIG and high dose aspirin, but during the treatment of IVIG she had a horrible, life threatening reaction to the gamma globulins - it was TERRIFYING! It was the longest minutes of my life as I watched nurses trying to get her stable fearing the worst the whole time, but knowing it was totally out of my control. Thankfully she was okay and after medication and running the IV at the slowest rate possible, she completed her treatment successfully. However within 24 hours she relapsed and had to be treated with a second dose. Finally after the second dose she began to act like herself again. We came home about a week later. She still sees cardiology and gets yearly blood work as her platelets have remained elevated and now her cholesterol has become elevated, and she's only 8 years old! We also have a very significant cardiac family history.

Just recently, I was tested for celiac disease. My TTG IGA antibodies were positive. Even though my practitioner said she felt sure it wasn't celiac with positive antibodies, I have my doubts, and then the more I read the more I wondered if there is some correlation genetically with the two diseases and if I should discuss with her cardiologist, even though she is symptom free.