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Hashimoto's/celiac

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Libby 1
Little Miss Knowitall 4
MrsSmitty10 2
BOOM BOOM BOOM 1
Boobsy McNicehiney 1
MusicNote 7
RMof2 9
dmc21 1

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MusicNote (Mod) --- 5 years ago -

Anyone hve any experience with these disorders- red? 

RMof2 (Mod) --- 5 years ago -

I don't have any experience with Hashimoto's.. What would you like to know about celiac? 

RMof2 (Mod) --- 5 years ago -

These are my bookmarked resources that I turn to when I have questions. Celiac Central
and
I love this forum.. I don't post on it.. I just lurk and find out good information.
Celiac.com 

MusicNote (Mod) --- 5 years ago -

Thank you. I can read up on it but what's your personal experience with it? Are there any foods that really make her ill? I know avoiding gluten obviously but do you her more prone to other illness, or allergies, or even other food sensitivities? 

RMof2 (Mod) --- 5 years ago -

Well.. Madison is not officially diagnosed with Celiacs. I refused the Gluten challenge test because it would require her going back on Gluten for 3 months and I don't want to put her through that pain.

Anyways.. I have noticed a sensitivity to dairy. We cut out dairy for about 3 weeks and gradually added it back little by little to see how much she could tolerate and it's much less than she use to eat/drink.

She also has other allergies that we aren't sure what they are too because she will randomly get really bad hives that will come and go for 2-3 weeks at a time and the doctor didn't take it seriously enough to refer her to see an allergy doctor. He kept insisting that it was from the heat. She has randomly gotten rashes and hives since she was a baby and the doctors even in NC always just told me it was heat even though she wasn't sweaty. I am waiting for Tricare to let me switch PCMS so I can hopefully get her in to see an allergy doctor. 

RMof2 (Mod) --- 5 years ago -

She also seems to be sensitive to something else she is eating and we haven't quite pinpointed it yet. She constantly gets canker sores in her mouth and I think it might be from certain fruits. My poor girl is just very sensitive to things.


By the way.. when she was on Gluten.. she was anemic.. Since going gluten free her iron levels are great. She also had thyroid problems before going gluten free and those tests are coming back as improved as well. 

dmc21 --- 5 years ago -

I don't know if you're interested, but I'm positive there are at least a few on the LU who deal with at least one of these. You could post over there, if you wanted. 

MusicNote (Mod) --- 5 years ago -

RM, have her worke up for an autoimmune disease because they manifest with sores in the mouth or on the tongue!! 

MusicNote (Mod) --- 5 years ago -

Thanks, D 

RMof2 (Mod) --- 5 years ago -

That's good to know.. Yeah she gets them on her tongue too.. The doctor tells me she has hand food and mouth disease every single time we go in there. She hasn't been exposed to anyone with it, she doesn't go to daycare, I clean and bleach everything every single time they tell me that and so do my parents (only other place she goes on a regular basis).. And there is never anything on her hands or feet (though the doctor swears if I put a magnifying glass up to her feet and hands I will see small little specks.. OMG!) She also told me last week that Madison had athletes foot.. I looked.. she had some fuzz between her toes! Should I break out a lighted magnifying glass for that too?! 

MrsSmitty10 --- 5 years ago -

Total shot in the dark but do you allow her to have chocolate? Obviously it has dairy in it and i have some friends and family that get sores from too much chocolate. If she's that sensitive it might not take much.

My daughter has a dairy allergy so I buy her the Enjoy Life brand dairy free chocolate bars. Very good! I think I remember you saying you know that brand from the GMO thread.

Good luck to all of you! Wish I could help. 

RMof2 (Mod) --- 5 years ago -

Thanks.. She doesn't get chocolate very often at all and haven't noticed the sores around the time of chocolate.. I have noticed them after certain fruits though. Hoping to get her in to actually see a specialist though. With everything she has been going through I am very upset that they haven't at least sent her to someone for some sort of consult. Especially since these doctors don't even know what they are doing when it comes to the Gluten stuff. 

Little Miss Knowitall --- 5 years ago -

.. I have noticed them after certain fruits though

Remove the skin of the fruit. It could be fertilizer/pesticides on the fruits.

I can not eat apples unless I peel them, even if I scrub them first. 

RMof2 (Mod) --- 5 years ago -

Thanks.. I will try that before cutting a bunch of stuff from her diet. It's been difficult because with her being gluten free her staples are fruits and veggies. 

BOOM BOOM BOOM --- 5 years ago -

Good one LMK. RM do you clean with chemicals? Like you said with bleach and what not. I'd stop that. Anything down the cleaning isle in a store I would pass. Be careful with deodorants. 

MusicNote (Mod) --- 5 years ago -

A lot of chocolate candy is made with cocoa and water, not dairy :) 

RMof2 (Mod) --- 5 years ago -

I bleached because of them telling me it was hand foot and mouth disease.. I didn't bleach on a regular basis before that.. 

Little Miss Knowitall --- 5 years ago -

My baby sister was dxed with Ulcerative Colitis(Dr didn't want to label her with Crohn's Disease for insurance reasons).

She's since gone gluten free and it has helped her symptoms considerably. 

Libby --- 5 years ago -

I have Hashimoto's. I was diagnosed 8/2012. 

MrsSmitty10 --- 5 years ago -

A lot of chocolate candy is made with cocoa and water, not dairy :) 

some, yes. But not all so it's easy to overlook.

I can not eat apples unless I peel them, even if I scrub them first. 
Even organic appleskins bother you? I can't stand wax on apples. So dang gross 

Little Miss Knowitall --- 5 years ago -

Organic apples are grown next to regular old apples. Even if they're not sprayed directly, they still get the overspray.

I'm allergic to most lawn & garden fertilizers. 

MusicNote (Mod) --- 5 years ago -

Ulcerative colitis is where the ulcerations or inflammation is contained in the gut. With Crohn's, the inflammation manifests in the entire GI track so the ulcerations are from mouth to anus.

If she believes she has Crohn's, insurance companies approve treatment faster with that diagnosis, vs. only a colitis that can be (in many cases) handled with diet.


There is a possiblity that my daughter has Hashimoto and a gluten allergy. I'm thinking the gluten allergy is a side effect of most GI diseases, or conditions. Or maybe it's a root cause :/ 

RMof2 (Mod) --- 5 years ago -

If you want to rule out Celiac.. Have her do the testing BEFORE she goes Gluten Free so that way the Gluten is already in her system and if it has done any damage then the damage is still there to be found. Don't want her to heal up and then them put her on a Gluten challenge diet. I am very annoyed with the doctors about this. They should have just had my daughter have a biopsy done from the beginning. They said they didn't want to do anything invasive and now they want her to do a Gluten Challenge so she can have a biopsy. I told them bs. Why is it important now to make her sick all over again and do something invasive when they could have done it before without putting her through more pain. 

Little Miss Knowitall --- 5 years ago -

If she believes she has Crohn's, insurance companies approve treatment faster with that diagnosis, vs. only a colitis that can be (in many cases) handled with diet.

Being labeled with Crohn's makes it more difficult to get insurance (at least when she was diagnosed 16 yrs ago.) 

Boobsy McNicehiney --- 5 years ago -

I'm sorry MN. :/ 

MusicNote (Mod) --- 5 years ago -

me, too but I AM happy we're finally narrowing down what is wrong with her. She's been sick for a year now and no matter how many doctors I have gone to, ER visits, insurance calls.....I am just so FED UP with this process. I have someone helping me now who is completely advocating for my kid,andhas made several calls in order to get us in to a new doctor as a doctor to doctor referral.

She has a thyroid storm hitting her right now and I finally have an order for bloodwork and other tests that will officially diagnose what this doctor believes is the root cause and underlying conditions. So ultimately, I'm glad we will have answers finally 

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