ShayFL

Yup.....you need to go to the Dr.

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I Googled "Crohn's" + "Diet" and the first thing I got was information on the SCD diet for IBS and Crhon's. If it were me or mine, this is what I would try.

I would like to try diet changes first but not sure the doctor would go for that.

If I had felt this way when they found pre-cancerous cells on my cervix, I wouldnt have a cervix anymore. They wanted to cut it off. Mutilate me and cause me future problems. I wanted to try a natural approach first. Turns out it was the right choice for me. 6 years later and about 12 PAP's that say I am all clear.......Doctor's know some things....but DO NOT know everything. A mother's instinct has value. Listen to it.

Any and all drugs do have side effects and they do not "cure" the problem. The right diet has a much better chance of healing her IMO.

Accidental glutenings were enough for me.

I got sick about 6 months ago after eating mussels in white wine/butter/salt only. I have not eaten them since.

I dont consider any concern "trivial" when it comes to keeping yourself healthy. I could not find any commercially available fish food that is wheat free. And several forums I found included many frustrated fish owners. But I found this:

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You freeze it. Sounded pretty easy to make to me. And probably a TON healthier for your little guys than commercial stuff.

My tests were like yours. Showing antibodies but not enough for a dx. I have "low" IgA but still within range. They should always test "total" IgA with Celiac panels and I dont know why they dont.

Regardless of my numbers, I have had a POS response to the diet.

Great news!! Glad you figured it out and that we could help.

Awesome!! So happy for you.

You can "assume" anything, but if she doesnt have POS blood and/or biopsy the medical community as a whole would not dx her. If it were me, I would push for genetic testing for her to see if she even has the genes. If she doesnt have the genes there is still a tiny possibility that it is Celiac (very tiny), but with MUCH LESS probability. You could be comfortable thinking it is an intolerance then. If she does have the genes, then if it were me and my child, with POS response to the diet and the genes, I would "assume" she shouldnt eat gluten for the rest of her life.

Enterolab did not find Celiac genes for me and neither did Kimball. It would have been questionable in my mind if the two were not consistent.

Enterolab did find 2 gluten sensitivity genes in me. One DQ3 is related to neurological disorders (which are my primary symptoms). After doing research on the DQ3 gene, comparing what I learned to my symptoms, and knowing I have the DQ3 gene, was enough for me to believe they are doing what they say they are doing. I feel comfortable with having paid them for their service.

First thing that comes to mind is B12. Have they tested this? Plus MMA? Also Iron and Ferritin. Low Ferritin can cause symptoms. Show us your test results and we can help. Or if they didnt test these, they should ASAP.

Fiddle Faddle....I have tried a dozen times to make it with canned coconut milk. Even tried using the same ingredients (gums) they use. I just couldnt get that "creaminess". It was always too "icey".

Sadly if you have been predominately gluten-free for awhile, that Celiac blood panel can come up false negative. You MUST be actively eating gluten foods/and lots of them for a good 3 months to have hopes of an accurate test. If you can handle it, you can ask that the test be deferred for 3 months. Start eating cream of wheat for breakfast, a sandwich for lunch and pasta for dinner. This amount everyday until test time.

If you already "know" deep down that gluten may be an issue, you can opt for a 100% gluten-free diet (including toiletries, etc.) and see if you get/stay better.

There is also Enterolab that can dx gluten intolerance (not Celiac) up to 1 year gluten-free. They also offer genetic testing. And casein (dairy), soy and egg sensitivity tests.

What were your exact tests?

Did they test total IgA? Is that the number you are referring to?

12!!! That is crazy man. I pay 3.49 a pint plus 7% tax. I would use frozen strawberries at home (organic) which I can get for around 6 bucks a bag. I could get a good 3 shakes out of that 10.00 investment.

Now with the coconut flavor....add some fresh pineapple and a splash of rum......and you got a delicious pina colada!!

I noticed these more when my Ferritin was lower (iron stores). I am still a WIP on that iron....but they have faded as I have gotten the level up.

I dont wear makeup hardly at all. I wear Burt's Bees tinted lip balm and maybe mascara when I go out. So I cant help you there.

Turtle Mountain So Delicious makes the coconut ice cream for you.

I never buy anything with sulfites....cuz they can trigger migraines. Even tho I do not have any evidence they triggered mine (they went away gluten-free), always seemed a good idea to avoid them.

They must put them in the flour or it is some of that outer shell that tears me up.

I generally do not trust others to prepare my food. I let a good friend of mine cook me dinner about a month ago. But she is "grain free" herself and understands CC very well. When I got there she showed me everything she used and she even covered all of the baking dishes in tin foil. Made note that she was using stainless steel spoons and such. I ate there and did not get sick.

But I had almonds and an apple in my purse just in case. I always have something in my purse. Always. Then again I have been doing it for years because I am one of those people who has gotta eat when I gotta eat.

So glad to be of service. I bet for those that can eat chocolate....adding choco syrup to it with some type of milk would be ubber yummy too.

Yes, ditch the "wheat packs". Fill a large sock with white rice and heat in the microwave. Works great!

I also have low IgA (but within range) like your daughter. So I had antibodies.....but not enough to dx Celiac.

Interestingly, my Mom has lower IgA too (must be genetic) and she tested negative for thyroid anitbodies a month before they removed her thyroid. They dx Hashimotos (auto-immune thyroid disease) during her surgery because her poor little thyroid had been attacked severely. Yet, she showed no antibodies with labwork.

So I would not rule out Celiac and assume there is no auto-immune attack going on. She has low IgA IMO and this can skew the result like it did for my Mom (and me).

Did they test the IgG mediated antibodies??

Enterolab also tests for casein, eggy and soy intolerance as well. They do the genetics and so does a lab called Kimball.

I can eat coconut: shredded, milk, fresh, cream. No problems whatsoever.

BUT I have tried "coconut flour" 3 times and every time I have the most horrible pain in my tummy that I have to lay in the fetal position for about an hour or so before it passes.

I wonder why? Do they grind the hard outer part of the nut with the meats to make the flour? The flour isnt white, so I suspect this may be so.

That outer shell doesnt agree with me.

Thing is that MOST almonds grown in the U.S. are grown in CA due to it's Mediterranean like climate. They are also grown in Spain, Italy and Greece. I get mine from here:

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It is a good company that I trust. 10.50 a pound. Some sites offer for 9.99 a pound, but I have no experience with them.

Cheese is fine if you tolerate dairy. Some Celiacs dont. Try it and see.

One thing I used to eat a lot when I was single was I would saute some chopped onions, throw in a can of refried beans and a dash of cumin. Then eat with tortilla chips. You can find gluten-free tortilla chips at Whole Foods. Someone else might be able to suggest actual brand names.

You can also spray some olive oil on your corn tortillas and bake until crisp. Cut into wedges and dip them into the beans. Yummy!!

Boil in the bag rice with chopped broiled chicken, then sprinkled with cumin and fresh cilantro added was another favorite.