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Intro: Celiac And Ee


usamma

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usamma Newbie

Hi! :D 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?

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AliB Enthusiast

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!

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    • Julie Riordan
      I am going to France in two weeks and then to Portugal in May   Thanks for your reply 
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      I made an account just to reply to this topic. My story resembles yours in so many ways that it is truly amazing. I also suddenly became lactose intolerant, went a little under 10 years attributing all my symtoms to different body parts, never thinking it was something systemic until much later. I had the same mental problems - anxiety, depression, fatigue, etc. In fact, the only real difference in our story is that I was never formally diagnosed. When I discovered that my myriad symtoms, that had been continuous and worsening for years, all rapidly subsided upon cessation of consuming gluten, I immediately took it upon myself to cut gluten out of my diet completely. I live in America, and had lost my health insurance within the year prior to my discovery, so I could not get tested, and I will never willingly or knowingly consume gluten again, which I would have to do in order to get tested now that I have insurance again. But that is not the point of this reply. I also had extreme TMJ pain that began within months of getting my wisdom teeth out at - you guessed it - 17 years old. I was in and out of doctors for my various symptoms for about 5 years before I gave up, but during that time I had also kept getting reffered to different kinds of doctors that had their own, different solutions to my TMJ issue, an issue which I only recently discovered was related to my other symptoms. I began with physical therapy, and the physical therapist eventually broke down at me after many months, raising her voice at me and saying that there was nothing she could do for me. After that saga, I saw a plastic surgeon at the request of my GP, who he knew personally. This palstic surgeon began using botox injections to stop my spasming jaw muscles, and he managed to get it covered by my insurace in 2011, which was harder to do back then. This helped the pain tremendously, but did not solve the underlying problem, and I had to get repeat injections every three months. After a couple of years, this began to lose effectiveness, and I needed treatments more often than my insurance would cover. The surgeon did a scan on the joint and saw slight damage to the tissues. He then got approved by insurance to do a small surgery on the massseter (jaw) muscle - making an incision, and then splicing tissue into the muscle to stop the spasming. It worked amazingly, but about three months later it had stopped working. I was on the verge of seeing the top oral surgeon in our city, but instead of operating on me, he referred me to a unique group of dentists who focus on the TMJ and its biomechanical relationship to teeth occlusion (i.e. how the teeth fit together). This is what your dentist did, and what he did to you was boderline if not outright malpractice. There is a dental field that specializes in doing this kind of dental work, and it takes many years of extra schooling (and a lot of money invested into education) to be able to modify teeth occusion in this manner. Just based on the way you describe your dentist doing this, I can tell he was not qualified to do this to you. Dentists who are qualified and engage in this practice take many measurments of your head, mouth, teeth, etc., they take laboratory molds of your teeth, and they then make a complete, life-size model of your skull and teeth to help them guide their work on you. They then have a lab construct, and give you what is called a "bite splint." It looks and feels like a retainer, but its function is entirely different. This is essentially a literal splint for the TMJ that situates on the teeth. The splint is progressively modified once or twice per week, over several months, in order to slowly move the joint to its correct position. The muscles spasm less, stress is taken off the joint, as the joint slowly moves back into its proper position. The pain reduces each month, each week, sometimes even each day you go in for a visit. The joint has to be moved in this manner with the splint BEFORE the modification to the teeth begins. They then add to your tooth structure with small bits of composite, to keep the joint in its proper place after it has been sucessfully repositioned. Subtracting from your teeth, by grinding down bits of your natural tooth structure, is done very conservatively, if they have to do it at all. This process worked for me - after six months, my face, jaw, neck all felt normal, and I had no more pain - a feeling I had not had in a long time. It also made my face look better. I had not realized the true extent that the spasming muscles and the joint derangement had effected the shape of my face. The pain began to return after a few months, but nowhere near where it had been before. 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The dentist sat me down and had a talk with me after these results came in, and said that when he sees damage like this in cases like mine, that the damage to the joint is most likely autoimmune, and that, in his experinece, it is usually autoimmune. He has sent patients with cases like mine to Mayo Clinic. He said he will continue to see me as long as the treatment continues to offer me relief, but also said that I will probably have to see a dentist for this type of treatment for the rest of my life. He is not currently recommending surgery due to my young age and the fact that the treatment he provides manages my symptoms pretty well. I still see this dentist today, and probably will see this kind of dental specialist for the rest of my life, since they have helped with this issue the most. I did not inform him that I am 100% sure that I have celiac disease (due to my complete symptom remission upon gluten cessation). 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      I've recently received a weak positive tTG, 6. For about six years, I've been sick almost everyday. I was told it was just my IBS. I have constant nausea. Sometimes after I eat, I have sharp, upper pain in my abdomen. I sometimes feel or vomit (bile) after eating. The doctor wanted me to try a stronger anti acid before doing an endoscopy. I'm just curious if these symptoms are pointing towards Celiac Disease? 
    • Scott Adams
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