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EE (Eosinophilic Esophogitis)
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Eosinophic Esophagitis One more food allergy and lactose intolerance my 10 year old has to deal with. we wont find out till tuesday what the other allergy is. i dont wanna feed her what she is allergic to anymore, i can't wait till tues. anyone else have or have heard of this EE decease???
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Yes, my daughter was diagnosed when she was 6. That added to her probable Celiac diagnoses when she was 17 months old. She is now 10 too!

There are EoE peeps here on the forum. Some are here because gluten is one of their triggers. There is a known connection between EoE and Celiac. (JAMA Nov. 2011)

I don't want to burst your bubble, but allergy testing is not reliable to identify all "triggers" for EoE. An elimination diet is often a first line of defense to find "triggers". Like allergies the reaction is mainly caused by proteins. There are amino acid based formulas that can be helpful for nutritional supplements.

Please remember, I will always give advice on the experience from my daughter's case and the limited research available.

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Oh my goodness, I just came on here to post something about this very thing. I have just been diagnosed with EE on friday. I was reading this study that is on this site about how it is more common among celiacs to have EE than the general population. The plot thickens. Anyone any good at data analysis?

Standardized incidence ratio was 35.6 (95% CI, 9.3-79.0) for children, and 13.1 (95% CI, 6.2-22.5) for adults. Overall, age-adjusted and sex-adjusted standardized incidence ratio was 16.0 (95% CI, 8.7-25.5).

The above is what the study found, any idea what it means?? Does that mean 35.6% of celiac children and 13.1% in adults? Or am I getting it all wrong?

There is so clearly a connection between everything I have, it is starting to get me down though. Just another thing to add to the list!

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I thought that article was written in a "goobly-gook" manner. I now that adult cases and child cases are diagnosed on a different count of eosinophils.

It seems the standard care for a child at diagnoses...

Prevacid

modified Flovent inhaler(so the liquid is swallowed not inhaled)

allergy testing

an elimination diet (eliminate all top 8 allergens and peas)to identify "triggers"

complications are dealt with as they develop. pain~ sometimes rest and slurpees work wonders, constipation is a daily battle, headaches, bad breath and scratchy throat.

My daughter has not needed surgical dilation or a feeding tube.

All of her known triggers are kept out of the house. We have noticed there is a seasonal airborne connection/flare.

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Add my 12 year old to the EE list. She has no symptoms if it. No swallowing issues or food getting stuck. They found it on accident on the way down to take the celiac biopsy. We have eliminated everything that was positive in the skin test and her patch test showed nothing. After eliminating all beans peas apples pork mustard gluten cantaloupe and bananas, she still scoped with EE. The "by the book" doctors will tell you to eliminate and rescope every 3 months but that's thousands of dollars for us and she has no symptoms we have scoped twice and the gi doc thinks it may be the fall allergies that made it bad this time. It may not even be food. She did not want me to do the elimination diet until she had symptoms. So that's where we are now. We avoid what showed up but will not keep scoping or eliminating more foods until she has a symptom.

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I agree with 1974 girl. You have to draw the line on how much scoping you are going to do.

My daughter was scoped during the elimination diet. (everything was clear and normal) That's when we started challenging possible allergens and based on her reactions identified her triggers. She was scoped again when she had seasonal airborne issues. (it showed active damage, no where near her initial diagnoses damaged state. She was very close to being put on a feeding tube when she was first diagnosed)

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    • She (your PCP)  can order a celiac blood panel.  It might not be a complete panel, but it's a start.  Any medical doctor can order one.  A GI is needed for the endoscopy (ulcers, Celiac disease, h.pylori, etc.), HIDA scan (gallbladder)  or colonoscopy (IBS).   Since you just saw her, email/call/write a letter and ask her to order (lab) the celiac panel.  You could go to the lab before or after work.  Pretty easy!  
    • I just now saw the second reply and I see what you mean. Again, the issue is that I may have to go with the gluten until close to the end of the year.

      However, an idea did just come to mind, and that is, can my primary care doctor do such a test? I had normal blood work done, but they didn't really say anything about testing for celiacs. I can get an appointment with my primary care doctor much sooner than a GI.

      When I was talking to my PCP last, I asked her what I should expect as far as testing goes or what she may have been concerned about. Her reply was about a HIDA scan for the gallbladder but also any test needed in case of IBS or Celiacs. Just the way she threw that in there like an after thought and left me hanging kinda had me worried.
    • I am not a doctor that's for sure.  So, I can't even answer your questions.  If you know you have pre-diabetes, you probably are working with a doctor.  Can you email them and ask for a celiac blood panel?   You can work on the weight loss and diabetes -- that you can handle yourself now and take action.  I have diabetes and my glucose readings are fairly normal now without medication and I'm thin.  Being overweight does not cause diabetes.  It's either autoimmune (type 1) or you become insulin resistant (type 2).  You can cut out all sugar and  processed stuff ASAP to help take action and start walking 10,000 steps (helps with the insulin resistance).    But the prediabetes is not going to kill you in the next year.  Whatever's in your gut is more likely going to get you much sooner.  But heck, I'm not a doctor and I don't even know you!    
    • Hi Steph, Yes, celiac disease can cause a myriad of symptoms and damage to the body,  Have you completed all celiac disease testing?  Usually they do the blood antibodies test first and then do an endoscopy.   You shouldn't go gluten-free until all testing is completed. Gluten is in many processed foods.  But if you stick with whole foods it is not hard to avoid gluten.  Getting used to eating gluten-free may take some time, as we need to adjust our preferences in diet.  But there are many foods that are naturally gluten-free.  Gluten is the protein found in wheat, rye and barley.  Some celiac disease organizations recommend avoiding oats also for the first 18 months of the gluten-free diet. Celiac disease impairs the ability of the body to absorb nutrients (including vitamins).  That can make it hard for the body to maintain itself and heal/repair damage.  So celiac can easily impact any part of the body. Sardines, tuna, mackeral and salmon have good amounts of vitamin D in them.  There are supplements available also, but not all are good.  You can check them at the labdoor website.  Nature Made is a good one and not expensive.  Internal damage from celiac can cause liver issues.  Those will probably clear up after being on the gluten-free diet a while. Recovery from celiac can take  months, and can be a rocky road.  The more you stick with whole foods and avoid cross-contamination issues the sooner you will heal IMHO. You may find that dairy causes problems for your digestion at first.  But it make stop being a problem after you have healed up some. welcome to the forum!
    • Will this be dangerous considering how long I have to wait for any testing? I may not even get a blood test in November but here is hoping. I just worry having to wait so long will cause serious issues, not to mention delay of weight loss which I need for the pre-diabetes. Do ulcers have a chance to cause yellow stools though? I suppose a stool test will be needed for that for any signs of blood in stools but visually it does not seem so. The biggest issue is not knowing what else could be causing the yellow stools as this would not be a diabetic or ulcer thing. And without negative signs on the gallbladder or liver, it is narrowing down the list.

      At the very least this is making me assume I can wait on a final scan of gallbladder and attempt blood tests and endoscopy if they recommend it.
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