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Any Advice Would Be Greatly Appreciated!

mlr3475080

By mlr3475080
in Doctors

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mlr3475080 Newbie
mlr3475080
Posted

Hi,

I am 33 yr old female and have been dealing with apparant celiac disease for over five years. My symptoms began with Urticaria (chronic swelling hives)I have to take claritin every day. Then over the years, goiter,night sweats, muscle aches and weakness,all around fatigue, my eyeballs swelled (yes, eyeballs literally!) puffy eyes, IBS diagnoses, acid reflux (that would put me in the er) trouble breathing,ADHD diagnoses, depression diagnosis, mood swings, terrible heavy heavy periods, back pain, gas, bloating, teeth grinding, chronic sinus infections, UTI's, ...the list goes on and on. I have had every single part of my body scanned and seen every specialist from rheumatologist to neurologist to endocronologist. Finally my doctor mentioned she had a best friend with celiac disease...thank god for a diagnosis but im not sure wheat is the only thing now! I just had homemade chicken marsala (gluten free) with fresh mushrooms and onions and my stomach is killing me! last night I made gluten free pasta with cheddar cheese,organic butter and half and half- same thing!It seems that if I eat ANYTHING besides fruit all my symptoms return! Ive had an endoscopy(prior to diagnosis) and have esophagelitis(sp?) I feel like Im losing my mind! What am I doing wrong here? I just want to feel better!!

-Misty

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haleym Contributor
haleym
Posted
Hi,

I am 33 yr old female and have been dealing with apparant celiac disease for over five years. My symptoms began with Urticaria (chronic swelling hives)I have to take claritin every day. Then over the years, goiter,night sweats, muscle aches and weakness,all around fatigue, my eyeballs swelled (yes, eyeballs literally!) puffy eyes, IBS diagnoses, acid reflux (that would put me in the er) trouble breathing,ADHD diagnoses, depression diagnosis, mood swings, terrible heavy heavy periods, back pain, gas, bloating, teeth grinding, chronic sinus infections, UTI's, ...the list goes on and on. I have had every single part of my body scanned and seen every specialist from rheumatologist to neurologist to endocronologist. Finally my doctor mentioned she had a best friend with celiac disease...thank god for a diagnosis but im not sure wheat is the only thing now! I just had homemade chicken marsala (gluten free) with fresh mushrooms and onions and my stomach is killing me! last night I made gluten free pasta with cheddar cheese,organic butter and half and half- same thing!It seems that if I eat ANYTHING besides fruit all my symptoms return! Ive had an endoscopy(prior to diagnosis) and have esophagelitis(sp?) I feel like Im losing my mind! What am I doing wrong here? I just want to feel better!!

-Misty

So.. now that you are gluten free, you have gotten one of the biggies out of your diet, but it may be time to try taking dairy away and seeing how you are doing. I know a lot of people with celiac/gluten intolerance have sensitivities to dairy, either caesin or lactose. I know that right after going gluten free, the lactose intolerance would literally confine me to a bed for hours because of the extreme bloating and pain. For me it got better with time- I can now tolerate some lactose... maybe a half-cup of milk a day or so at the most.

Stick to whole foods with minimal sauces for a while too- potatoes, rice, beans and maybe corn. It's probably good if these are organic also. Stay away from raw spinach- it has a certain acid in it when raw that can really tear you up if you dont cook it to denature the acid.

Road's end organics makes some good vegan and gluten free gravies, so if you have to have something, give those a try. Make an effort to bake your own gluten-free breads/pastries/sweets so that you know exactly what is going into them.

Hope this advice helps. You will hopefully feel better soon!

Haley

dilettantesteph Collaborator
dilettantesteph
Posted

Though I can eat some cheese, I can't eat butter. I don't know why. I have been glutened by mushrooms before. I am sensitive to very small amounts of gluten. I think that sometimes mushrooms are grown on wheat, barley, or oat straw and the tiny amount of gluten or avenin that can get on them that way seems to be enough to make me sick even though I did wash them thoroughly. Also since I am so sensitive, I have to avoid almost all processed gluten free foods.

Jean'sBrainonGluten Newbie
Jean'sBrainonGluten
Posted

You might try a rotation elimination diet or a specific carbohydrate diet and see if you can get some relief. Also you may have gluten antibodies doing stuff in your brain and in that case migraine triggers like onion, cheddar cheese, and mushrooms can trigger big trouble - even stomach trouble that is called abdominal migraine. What I've found is that with really diligent gluten free eating and avoiding skin, inhalation and other gluten cross contamination I can have some of the migraine trigger foods like those after several months gluten free - otherwise they really set me off.

Also the xanthum gum used in most commercial gluten free baked goods is a trigger for me and many other people, so that's something to consider.

Good luck!

mlr3475080 Newbie
mlr3475080
Posted
  • Author

Thank you all so much for your input. Im so sick and tired of being sick and tired i just get so frustrated sometimes. This is going to a long process and I have to accept that. Looks like I may be allergic to alot of things...here we go! :) thanks again guys!

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