Help...i'm So Scared!

[mart]

Your advice and friendship has gotten me through so much since my son's diagnosis last August. He actually gained 6 pounds since going gluten-free 9 months ago, but now he's complaining of stomachaches pretty much every day. We are totally gluten-free at home (toothpaste, shampoo and even pet food) and now here he is, 9 months later complaining of stomachache and leg pains, not gaining any more weight or growing, maybe even lost a pound or two. BTW, he's great about staying gluten-free. He's so scared of getting glutened that he won't even accept the gluten-free candy I gave his teachers when they give it to him.

An acquaintance with a celiac/diabetic son told me her son's endocrinologist has been awesome. Since my son's gastro ridicules everything I ask and won't answer half my questions without rolling his eyes, I asked her for the endocrinologist's name and number. She gave it to me but said that she wasn't sure he could help my son since he doesn't have diabetes. Is this true?

I am desperate. Would also love to hear if anyone else or their kids have slipped back for no apparent reason. I'm praying we're not dealing with refractory sprue.

[Guest nini]

I have found that whenever symptoms start creeping back in and I haven't changed anything in my diet, I have to go back through all the products I use and re verify gluten-free status. Every single time I have found something where an ingredient was changed or entire formula changed or the company added another product on the same line increasing risk of cross contamination.

Also, he may be having issues with dairy or other food intolerances. I don't know anything about endocrinologists, so I can't offer any advice there, but I would highly suggest re verifying ALL products he comes in contact with. Including art supplies, play doughs, paints, pastes etc...

Then if all that checks out, try an elimination diet to see if there are other foods he is reacting to. Common culprits besides dairy, are corn, rice, soy, and tomatoes

[Nancym]

You might want to give the SCD diet a try. It has helped a lot of folks with intestinal issues.

[TCA]

There was a mom on here a while back that figured out her son was getting glutened by the glue on the paper towel roll. that made me realize it can be ANYWHERE!!!! My daughter seems to be even more sensitive the more we are on the diet. I thought we were 100% gluten-free utnil I found out that log cabin syrup had been reformulated and now contained gluten. I started making my own and gave up on bought ones. I agree with Nini, just go through everything with a fine tooth comb. Good luck!

[2kids4me]

HI, this is my first post here, I am trying to figure out how to post the info in blue at the bottom, so until I do - this is our siutation: I have a son (11 yr) diabetic/celiac - diabetes diagnosed Sept 2003, celiac confirmed by biopsy Aug 2004. A daughter (13yr) diagnosed hypothyroid age 4, Hypotonia at birth, Aspergers at age 7, Kawasaki June 2003, celiac May 2004, stinging insect allergy diagnosed by RAST test 2005 (after reaction to wasp sting prior). I have insulin dependent diabetes (25 at diagnosis), hypothyroidism, and pernisious anemia. We are refered to as a family with polyendocrine failure because 3 family members are affected with multiple immune mediated diseases.

The kids are doing very well since going gluten-free. Son had severe joint pains, slow growth and bedwetting prior to going gluten-free - all gone except minor flares of joint pain. Daughter had severe migraines, stomach aches and back aches. Only come back if accidental gluten ingestion. Daughter is most sensitive to trace amounts.

A rheumatologist or endocrinologist may be able to answer to your concerns. Is it possble for your GP to run some basic tests? The symptoms you describe can accompany accidental gluten (esp if those were his symptoms prior to diagnosis). Slow growth can also accompany diabetes or hypothyroidism - in which you would also see fatigue and constipation. My children's endocrinologist (they both see the same one) recently addressed my concerns about intermittent joint pain returning in my son. If I recall correctly she stated that prior to the celiac diagnosis there is a systemic immune response in individuals - where there is inflammation in the joint spaces, this can flare up from time to time during bouts with colds/flus or gastrointestinal viruses. They dont fully understand why - its like the joints become sensitive to immune responses to anything..

You have genuine cocnerns that should not be dismissed with the roll of an eye - it may be nothing or it may be something. Write down concerns in point form, keep it short. When you get there you can explain why you have the concerns and that you would appreciate the doctor ruling out conditions that may cause these symptoms. I found it hard at first to convince doctors that there can be 2 conditions at once - by their training - they are taught to find one disease that could cause all symptoms. As you can see by the list in my children - it is very possible.

I am not a doctor and my advice comes from mommy experience and having children with multiple issues, I can only relate what has worked for me - it may be totally different for you.