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Howdy08

Still Hurting After 5 Years!

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SO I eat religiously gluten-free but I guess I am being contaminated somewhere in my diet because my stomach hurts ALL THE TIME. Its wierd because I dont know anyone whose stomach is as LOUD as mine. It just freakin digests loudly and it hurts...my boyfriend calls it "grungles." It is sometimes in the middle of my stomach and sometimes in my lower abdomen. My lower stomach does stay bloated looking a lot, but most of the time it doesn't feel like it is due to wheat its just "grungly" and really loud and semi-painful but its every day and every time I eat. I get emotional about it sometimes but it really doesn't hurt that bad it just wont stop. I feel much much better after all these years of eating gluten-free but this one thing is really making me sad.

ANY Suggestions?

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I have to say it's almost certainly an intolerance or some other sort of problem w/ some other food or foods.

I don't know what you currently eat, but one way to find out is to simplify your diet, leaving out processed foods & their list of a gazillion ingreds, and keep a food/symptom diary.

It can then become a very simple exercise to discover which foods lead to pain and/or the "grungles".

But it's a very difficult task to isolate the problem if eating processed foods w/ those long ingred lists.

Good luck Howdy08!! :)


>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03

Dairy-free since 10-04

Soy-free since 5-07

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Thank you for the quick response! I will try both suggestions...Start a food journal, and switch to simpler foods. Hopefully I can figure it out. You guys just helped me more than you know because my friends and family try to help but they just dont know how.

THANKS A MILLION!

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Thank you for the quick response! I will try both suggestions...Start a food journal, and switch to simpler foods. Hopefully I can figure it out. You guys just helped me more than you know because my friends and family try to help but they just dont know how.

THANKS A MILLION!

I have to agree that for now you should try to eat as little processed foods as possible. Also the issue of CC or 'government declared safe levels of this toxin' can cause us problems. You won't know how sensitive you are to either until you eliminate the processed foods and then add things in. As stated many of us are sensitive to dairy and also to soy. Both are as hard to pinpoint as gluten is because they are in so much. Also if you are the only gluten free person in your household make sure you have your own toaster and are diligent about cleaning surfaces before preparing your food. Two other things you need to look out for is non-food gluten, ie. thing like paints, clays, shampoos, toiletries, drywall compound, pet foods etc and gluten in over the counter drugs, supplements and scripts (they don't have the same labeling requirements as food and gluten can be hidden without any notice). All of these and more can cause CC issues. Best wishes and I hope you figure things out soon.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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My lower abdomen didn't seem to get better, I was always in some sort of pain with it. After about 6 months of this, I recently stopped dairy to see what would happen - I very rarely have this pain now... I miss dairy, but I love the pain free abdomen now. Since my dx'd with celiac - I have made some resent mistakes with gluten so I will stay off dairy for several months and then try and reintroduce it to see what happens, but for now, no dairy for me.


Feb 9, 07 - Positive gene test D2 -Celiac Disease and Positive D3 for Gluten Sensitivity-Double Whammy!

Positive blood test for antibodies for celiac

SEVERE Gluten Ataxia - trouble speaking - could not even turn my head side to side - almost bedridden

March 07 - 2 different doctors have documented my records as confirmed Celiac

Oct 07 - found a secret to feeling better - no processed foods - The healing comes from eating raw vegetables, and fruits!

Husband - tested = celiac gene+diabetes gene

3 children-

youngest - doc wont test has w/ Hashimoto Disease

middle- tested = celiac gene+lymphoma gene - dx-celiac

oldest - ignores warnings

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dear dear fellow celiacs,

i've been depressed and started reading this list and discovered there are other people out there with the same struggles as me! i think other 'normal' people around me think i'm nuts.

my diet is crazy. no gluten i am severly allergic. thought i was gluten-free for 2 years, but was getting a mistery source of G from hair care products! so since that discovery it's been one year. i cannot eat any grains (even gluten-free) except for brown rice. i cannot eat any sugars, even fruit sugars. no booze, no chocolate, no dairy, no soy, no nuts, no beans, no coffee, no caffiene, there's probably something i am forgetting . . . regular people ask me 'what do you eat' vegtables, fish, chicken, beef, eggs, liver, brown rice! the main staples of my life.

tea with stevia. stevia is my friend - the only sweetner in my life right now.

i have had/have all kinds of deficiencies - low iron, vit D, b12, thyroid, potassium, magnesium, calcium, etc. Obviously i don't absorb. Right now i am just getting over a bought with anemia (again seems to happen about every 2 years). i have the best diet out of anyone i know, good oils, lots o organic veggies, meats, brown rice. still i am deficient. it is so frustrating!

When will i get better? i hope in the next two years. i have switched drs. yet again. it seems no dr. wants to find the source of my problem. they look at me and say 'you are healthy' yet i know something is wrong. my current dr. is chinese and we are on the same brain wave length about my diet. other drs. have told me i should be able to eat x and y, when i know i can't. at least this dr. is taking my limited diet seriously and he agrees with me.

he has a plan of using chinese herbs that i take home and make a tea out of. i drink it after every meal. he says in one year he thinks my intestines will heal. that's further than any other dr has cared for me. no one else even had a plan.

it's so fustrating that the medical community is mostly in the dark about what is going on with us. i am self diagnosed. stool test positive, gene positive, blood neg. never attempted scope. diet elimination very conclusive.

so it seems i have candida overgrowth also. i've had gastritis also. so what helps with both is taking fibersmart by renew life before every meal. make sure the stomach is never completely empty. even if i need to put off eating my meal, but i feel empty i take a half scoop. be sure to use alot of water with this fiber. i use twice as much water as recommended. this has brought my stomach/ lower abdomen inflammation way down.

then also take probiotics with every meal. two ways to get less expensive probiotics are to buy keifer and water keifer grains and make coconut milk keifer and coconut water keifer, respectively. the keifer is alive and when put in cc milk it eats all the sugar leaving good yeast and good bacteria. this way there is a one time keifer grain investment, then just reuse them and add more milk. u can use other kinds of milk if you aren't allergic.

i've tried threelac and i think it's a scam. at least for me. it is packaged with sugar which put me on a thyroid swing/crash. so coconut milk keifer is cheaper and better for me.

i've tried all other kinds of store bought probiotics, cfs nutrituion, naturen, enteric coated ones, and the only one i would recommend right now is the DDS plus brand. The others are very expensive and don't seem to work as well or at all. naturen is good but holy cow it's expensive.

also i've discovered my body was very very acidic. To combat this i got a bottle of trace minerals, and eat some kelp or other seaweed and celtic salt with every meal. my saliva ph is 7.0 upon rising now which is great! Started at 5.4 three months ago.

fish oil is very important. i use nordic naturals proefa xtra has a higher concentration omega 3s.

stress reduction, is probably my number one struggle. i have too much to do and i can't clone myself :) stress upsets the digestive process. i make stress reduction a number one priority. i try to take time to actively relax.

on the weird upside, this whole adventure of my health had led me to change careers. i am going to night school right now to take pre reqs. to become a naturopathic dr. to help myself heal and help others!

so what am i trying to say? i don't know. i am just glad i am not the only one on this whole earth navigating through my life with this mostly mysterious afflication.

i send a group prayer and blessing right now that we will all listen to our inner voice, make a plan, and recover.

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