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Thanks everyone who responded to my initial query re my 7year old daughter, Krystal, with Down Syndrome who we discovered was less hyperactive on a wheat-free diet. She has had negative blood tests for celiac in the past, when still eating wheat. My questions and extracts from answers:
1.Would Krystal still be getting enough gluten, from rye and oats, to produce a positive biopsy - assuming she has celiac?
- ...rye probably won't do it alone ...but if she reacts to rye as well barley too chances are
strong that she's celiac. Those who have wheat intolerances don't have problems with rye and barley. Also, those who have wheat intolerances can usually also eat spelt and kamut (which are ancient wheat) without reactions. But celiacs cannot.... They are usually mentioned in the order as to how much gluten they have: wheat, rye, barley and oats. So the rye and barley do not have nearly so much gluten in them as wheat...There has been a great deal of discussion about how much and how long a challenge should be and there is no consensus. Talk with your Doctor. My personal feelingis that the minimum is 2 slices of bread per day for 6 weeks to get an accurate test but I would not try to second guess the Doctor...I will add here, that if you choose to have a biopsy done, you should have from 12 to 20 samples taken - not just the 2 or 3 that many docs want to get by with. (from two long replies from Vance who also had a list of reliable labs in the US; unfortunately a bit far away for me :)
- I was Wheat-free for 10 months before getting a small bowel biopsy which came back as; "partially treated Celiac Sprue", so that was considered a positive for celiac disease. For those 10 months, I was still ingesting rye, oats, and barley. I did not go back on wheat for the biopsy.
- Would they accept Dr. Fine's stool test as positive proof...I think his test is sensitive enough that it
would be able to pick up the cross contamination that you are speaking of.
(Several people recommended this test; check out the Enterolab website http://www.enterolab.com/ for details and costs. The FAQ was also very informative.)
- "wheat intolerance" is basically low-level celiac. i.e. you can react for a long time before your gut is damaged enough to show up on the tests. Kind of like "borderline diabetic".
2a Does anyone else have experience with hyperactivity as the main symptom?
- My son and daughter had these symptoms. Especially as they were younger. They even get what I call wheat circles under the eyes. My daughter, 18, now, has occasional loose bowels. My son, 7, has loose stools as well...For my daughter, I thought it was just wheat. Now she is iron low. My children will not go GF.
- These are symptoms that my grandchildren exhibited before going GF. Three of them were not biopsied and blood tests showed negative, but were not done by a credible lab. Dr. Fine did the diagnoses and they are now normal great kids. By the way they all had constant illness...We thought one (2 years old) was deaf because he did not seem to hear us when we spoke to him and his language was delayed. Hearing was fine. Once gluten free, he quickly learned to talk, listen ...My children with gluten problems all had learning disabilities which improved greatly.
- I have a daughter with DS before she was biospy diagnosed her behaviors were MAJOR
...especially anxiety and obsessive compulsive traits. She was much better as soon as we implemented the gluten free diet.
- My son has a totally different personality when eating gluten; angry,depressed and quick to take offence.To this day,if he eats gluten,even if his stomach doesn't have the runs we know by the 'mood'.He is 14 now,but has been gf. for 3yrs+.
- Yes to hyperactivity and demand the dr do a biopsy...
- My son had none of the typical signs of celiac but he did have severe behavior problems. We had him in counseling for it... one of the diagnosis was ADHD. We did eventually have him tested for celiac and the blood test was negative. However the biopsy was classic celiac.
- My child hasnīt Down Syndrome, but she couldnīt run like her friends; she felt different, tired, she tried to run quikly, but she couldnīt until she changed her diet (after a positive biopsy for CD). She was sad, aggressive, and very slim. Now she is happy, her mood changes a lot, and feels strong.
- My nephew tested negative to the blood screening test for celiac disease ordered thru his doctor. Rather than putting him on Ritalin to correct his behavioral problems, my sister had him tested at Enterolab. Like the blood tests, the results from his stool sample also showed that he did not carry the endomysial antibodies specific for celiac disease; BUT, they did reveal that he carries a marker which puts him at risk for developing celiac disease, that he has a gluten and yeast intolerance, is EXTREMELY intolerant to 3 proteins in milk and that he has mild intestinal malabsorption. Based on these findings, Dr. Fine advised that he eliminate gluten, dairy and yeast to decrease the risk of developing various autoimmune disease associated with these proteins. The results of doing so have been dramatic!!
- I have an ADD 16 year old son who voluntarily follows the GFCF diet because it makes it possible for him to control his own behavior. He's also more calm and is more confident, sociable & makes better grades since starting this diet. GFCF means gluten free casien free. Kids with behavior problems related to gluten sensitivity are frequently sensitive to the milk protein casien, as well. There's a whole website dedicated to supporting families with this diet that have children with behavior problems. By the way, my son had a complete work up for celiac disease, but all tests came back negative. I believe he has subclinical celiac disease, which means that he's sensitive, but doesn't have enough antibodies in his blood to "show up" in his blood or flatten intestinal villi.
- I have a son who has ADHD with ODD and Anxiety Disorder -in addition to Cystic Fibroisis. I have found a great improvement removing milk and dairy from his diet and his behavior is much better!!! I give him Vances Dari-Free milk. I haven't taken him off wheat -but try to limit it. I myself have Celiac Disease.
- I met a celiac specialist when I was in Australia -and he said he's found that the wheat-intolerant/allergic people have more neurological issues while the 'true celiac'has more wasting issues.
2b Does anyone else have experience with persuading a doctor to do a biopsy even if the blood tests are negative?
- In terms of persuading the doctor to biopsy -- yes, I had that problem. I am about 10 pounds overweight, so my gastro dr. was very reluctant to stamp celiac on my chart and send me off. I had all the other symptoms -- fatigue,edema, etc. -- but the overweightedness was his stumblingpoint. So I asked the celiac list how many were overweight when diagnosed -- and I got a FLOOD of over 100 emails, which I promptly gave to the GI and we then scheduled the biopsy.
- I have a daugther, she is nine.Two years ago I started to suspect a she had celiac disease, I was learning a lot because my father in law had it. Of course I cheked with 3 diferents pediatricians, I took her for the blood tests, and the results was negative. Doctors told me the same, she hasnīt got celiac disease. Everithing was ok.,her weigt,her height.....But I learned about genetic predisposition, so then I found a specialist in celiac disease (gastroenterology kids), and inmediately he looked at her body and recognized that she had lost muscle mass, so he suspected she had it. He recommended a biopsy and the result was positive.
- My 58 years old daughter was biopsied about 10 years ago and it was negative. Last year she began having numerous mouth ulcers... She had Dr Fine's test and was diagnosed as gluten and yeast sensitive, also has 2 genes for celiac. Since going gluten free, the ulcers are gone except when she has "cheated".
- ...once I was diagnosed, I began looking at our children in a different light, and had the two (of the 8) biopsied who I thought showed the most prevalent symptoms. They were both positive...
- For support re seronegative blood tests but positive biopsy use the search word "seronegative" in the listserve archives. Around Oct 2001(I think) I did a summary on this. Barb
And finally several people did mention about the increased incidence of Celiac among people with Down Syndrome. And the Rye and rice bread Krystal eats is wheat-free (most "rye" breads do indeed have wheat).
Update: And if you've read this far then you'll be interested to know that, with the help of extracts from emails I received, our GP is going to consult with my eldest daughter's paediatrician about a biopsy (Krystal's paediatrician is away for a few months or I would have consulted him directly - the other daughter has DS and CD). I can assure all who replied, and particularly those who wrote about their child's hyperactivity that without them I probably didn't have a chance. Dr Fine's test sounds an attractive option and I did mention it but I think we may live too far away, and I don't have the money to do it privately ($US-$NZ exchange rate is not in our favour - unless exporting goods).
Regards
Stella.
New Zealand
South Pacific, next to Australia!
*Support summarization of posts, reply to the SENDER not the Celiac List*
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