Intro: Celiac And Ee

[usamma]

Hi! I just found this forum after a friend told me about it! I'm so glad there is something like this available for newbies like me.

My youngest daughter is four and has Open Original Shared Link and GERD. It took 35 months to diagnose her and it was a long 35 months! She had a feeding tube and eats some foods. Thankfully she has a wonderful GI now and we have a handle on her disease. There are challenges but we are just happy we know what is is now and we have found some safe foods she can enjoy. She's feeling much better overall. She's had 5 scopes/biopsies and does not have celiac's-- she just has EE.

So then I noticed last year that my 7 year old was having tummy aches and it was getting worse and worse. She has fatigue to the point of crashing after school and sleeping through dinner. She broke her arm last fall very easily by simply falling on the playground on grass, and broke her humerus. She has very itchy skin that never seems to get moisturized even with lots of lotion. She has complained for years of tingling legs and was a toe-walker until she started school. After my little one was born I didn't give as much attention to my older one-- after all she was growing-- thin but growing-- doing well in school, etc. My younger one was vomiting and suffering horribly so I focused my attentions on her. Only as she started to get better did I notice my oldest was not doing so great, and especially since the tummy aches got worse.

I took her to the wonderful GI and she was tested for Celiac's by blood and it was positive. On Monday she had an endoscopy/biopsy. Lots of visible inflammation was found. The biopsy results were in today and Celiac's was confirmed. Now I feel horrible for not being more proactive about getting her looked at. The good news is that she has no eos at all, so no EE! Her RAST test was also normal. The GI is ordering that my husband and I now get tested for Celiac's. It was found that I have mild EE when I went for my endoscopy. I'm pretty sure I don't have Celiac's but the GI just wants to make sure.

I am amazed that we have two children with two different GI conditions that are sorta similar but also very different in how they work. The bottom line is if they eat the wrong things they get a lot of inflammation and related problems. Does anyone else have both EE and Celiac's in the family?

It's going to be a challenge because one of the few foods my EE child can eat is wheat. She can't have oats or rice.

Also, we are going on a 10 day road trip next month including staying with family that I know will not "get" Celiac's. (My EE daughter is staying at home.) I'm not sure how to manage the eating part of the road trip. I think I can just cook for her at the family's house. They make some nice packets of Indian food that you just have to heat and eat and my dd loves Indian food. But I'm thinking about breakfast and lunch on the road. I wonder if I can just resort to Pediasure in an emergency?

[AliB]

If you don't mind me saying, I would put money on your 4-year-old having Celiac.

I checked out your EE link and the symptoms are almost identical! I also have a book entitled 'Dangerous grains'. In the appendix at the back are listed over 150 illnesses and diseases which have a causal link to gluten intolerance/Celiac and I am sure Eosinophilic disorders are included in the list (I have put the book down somewhere and can't locate it at the moment!).

The raised white blood cells shows that the body is trying desperately to fight off infection or parasites. The white plaques typical of EE are almost identical to thrush.

I have had major problems with yeast-based bacteria all my life, but it hasn't been until I went gluten-free 3 months ago that i am finally getting the mastery over it. I suspect that your daughter's continued ingestion of wheat is what is actually keeping it going.

Tests on children younger than 6 (and sometimes even older) commonly show no evidence of Celiac. With others diagnosed within the family the risk is a lot higher. Everyone presents differently - the fact that your daughter does not show any obvious changes yet to her gut does not mean that she is not Celiac.

As the docs seem incapable of finding the Celiac, the only real test is to get her off all gluten including oats for a while and see what happens. As it looks as if you will be having to do that as a family anyway it should make it easier for her. Try to give her a plain diet, unprocessed - keep to good meat, fish and poultry, fresh fruit and veg and keep the carbs and sugar very low as they feed the bacteria. There is a good website - Pecanbread. It is designed for kids with ASD but is beneficial for all with health issues, adults and kids alike. The diet is adapted to the Specific Carb Diet that focuses on plain foods and there are loads of recipes and interesting pages of info.

Sadly, biopsy is the accepted 'gold-standard' testing procedure for Celiac. But there are thousands of Celiacs who do not present with any overt bowel abnormalities. Many of these invariably get missed, leaving them vulnerable to a host of illness and disease. It is irresponsible of your doctors to dismiss Celiac simply because the current testing procedures cannot detect it and do not give a 'guaranteed' diagnosis. One avenue is to get a gene panel done for her. It won't give a diagnosis but it will indicate whether she has a genetic marker for the disease and that would add greater weight to the probability of her having it.

Gluten is behind a whole host of health issues. It is evil stuff. If doctors put all their sick patients on a gluten-free diet, at least 80% of them would no longer be needing the doctor!

I hope you can get this sorted for your little one, one way or another. It is bad enough when you are sick as an adult, but when it is your child it is heart-wrenching. We are going through it with one of our grandsons and I feel for your pain.

PS. On a gluten-free diet the GERD will go away too, mine did!