10 Yr. Old - New Diagnosis

[azmontessoriteacher]

Hello,

I am new to this group. Just this week my nearly 10 year old daughter was officially diagnosed with Celiac through blood work and positive biopsies. She was previously diagnosed Hashimoto's Hypothyroid in 2008 at the age of 6. She has had a history of intestinal issues dating to a few months of age. Biopsies done in 2006 came back negative for Celiac's. Since she was diagnosed with Hashimoto's she has had annual blood tests for Celiac, but they have all come back negative until this past August.

Over the last few years she has had increasing anxiety, depression, learning issues, stomach aches, muscle pains, insomnia, hot flashes, migraines, general malaise, moodiness, and more. Many of these I know can be symptoms of Celiac's, but she supposedly has not had this disease until very recently (bloodwork done 11/10 was negative).

I am now wondering if she could have been undiagnosed for the last several years as her symptoms could indicate. Has anyone else had this experience?

Right now I am just hoping that we see some rapid improvements by going gluten free. I swear I don't remember a day of her life during which she has not told me she does not feel well. Maybe this will finally end. . .

[tracker]

I recently read "Wheat Belly" by Dr. William Davis, and he stated in it, that some people are intolerant of gluten but still test negative. Also, some are intolerant of it and lack the digestive problems, but it manifests itself in other ways, such as the Hashimoto's Hypothyroid (as you say your daughter has), dementia, Chron's Disease, etc. He even thinks Type 1 diabetes *might* be caused by wheat/gluten.

So yes, there are many others who have had the same experience as you. Dr. Davis stated in the book that he had many patients who had been to several other doctors before figuring out what was causing their medical issues.

[shadowicewolf]

Its possible that she had false negatives from her previous tests, as they are common.

[Roda]

My 10 1/2 year old boy has been negative on blood work now four times. He had a negative biopsy also. I kept having him blood tested because he just seemed to have signs that could be celiac. Despite all the negative tests we decided to trial him gluten free anyway. I have already seen some improvements. He is going to the bathroom regularlly, no belly aches, his color has improved, and he has gained 2 lbs. since July 29th. He hasn't gained any weight at all this year till now. I posted on here about him almost two years ago and people were encouraging me to try the diet then. I wish I had then, but he is now, and that is what is important. So I guess I am saying that yes she could have had celiac even with the negative tests. My oldest boy doesn't have a celiac diagnosis, but the GI is calling it gluten intolerence. My youngest who is 6 1/2, initally had negative blood work. Two years later his blood test was positive. I did not put him through a scope. He has celiac. I started looking back to all the issues he had as a baby till almost age three and wonder if he had it then(before my diagnosis). He was almost 4 when I was diagnosed and wasn't having any issues at that time, so was content with the negative blood test. He started having issues that caught my attention again when he was 5 1/2.

I try not to dwell on the what if's, cause if I do I'll drive myself crazy. What is important is that we have all found our way and all three of us are doing well. I so hope the diet brings your daughter much deserved good health. it can take awhile for healing. Some people report a withdrawl effect and feeling worse for a little bit. I believe both my boys suffered some withdrawl effects. The got more moody and emotional. Youngest one had an increase in his tempertantrums. Older boy became very nasty to everyone around and had insomnia. All are resolved now. It would be wise to have all first degree relatives tested as well (mom, dad, and siblings). The chances are higher, 1 in 22 vs. 1 in 133 with a first degree relative diagnosed. Good luck and here is to good health!

[azmontessoriteacher]

I appreciate everyone's thoughts. I have been telling the doctors for YEARS that I was sure there was an underlying factor that was being missed causing her many issues. They could never find anything. I was told several times it was probably psychological. . . Interestingly, the first thing the psychologist said to me when I took her, "Are you sure there is not a medical reason?"

We have been to homeopaths, naturopaths, acupuncturists, mds, specialists, chiropractors, etc. None said to go off gluten, even though we tried that on our own several times. I think I just did not maintain it long enough and I know I did not have an awareness of all of the hidden sources.

I appreciate reading so many people's experiences and knowing that I am not crazy :-)

Now, I just eagerly await the positive results. . .