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This Is More That Celiac!


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9 replies to this topic

#1 mela14

 
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Posted 15 December 2004 - 01:17 PM

OK..this is an official venting session. I thought I was doing better by avoiding gluten but the truth of the matter is that everything else is bothering me! What is going on? Now it seems that the little bit of milk that was in my coffee(which, BTW I never have anymore but had some of hubby's today at the office!) is giving me the same stomach symptoms! So I guess I can add milk to soy, peanuts, eggs and gluten. I've been having a lot of migraines (almost daily), muscle pain, fatigue, joint pain. These ups and downs are really stressing me out and causing me to have anxiety attacks. My dr. ordered some blood tests that I have to go for to test for nutritional deficiencies. I will do that ASAP. Today I had a bone density test and will have to wait for those results but I already know that the first bone density that I had done 2 years ago showed osteopenia...more fun...so I'm assuming that 2 years later it will probably be worse, especially since the hysterectomy(july 2002). I was not on estrogen because of horrible side effects and not being able to take calcium supplements because of the reactions I had to it...who knows maybe there was gluten in the calcium.....just like the other vitamins that I was not able to tolerate. I am so sick of being sick and tired of trying with no real results! OK........that's it for the venting session. What choice is there? I just wish I felt stronger. I have daily low abdominal pain which I always thought was pelvic from gyn but after going to my new gyn last week....he said that the pain I was pointing to was bowel pain probably due to inflamation! With his exam he concluded that other organs, bladder and remaining gyn area were not responsible for the pain ...as he palpated those and he did not get a pain response! I am so confused and so frustrated! I am tired and weak and just want to feel better! This really stinks............sorry for long sob story.........I'm just exhausted.
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

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#2 Carriefaith

 
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Posted 15 December 2004 - 01:42 PM

If you just recently started the gluten-free diet, it may take awhile for your intestines to heal. This would mean that you may continue to have symptoms until your intestines are healed. If you've been on the diet for over 6 months then I would get additional tests done to make sure nothing else is going on.

You're not alone though. I've been on the diet for just over 9 months and I am still not better. I am waiting for my colonoscopy results to see if there is anything else going on with my intestines. I get the results on Friday.

Hope you feel better soon! :) I know how hard it is...

-Carrie
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Carrie Faith

Diagnosed with Celiac Disease in March 2004
Postitive tTg Blood Test, December 2003
Positive Biopsy, March 3, 2004

#3 YankeeDB

 
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Posted 15 December 2004 - 02:58 PM

My heart goes out to you!

I have a theory that as the intestines heal the new tissue is more sensitive to certain foods. It may take more time than you had hoped to feel really good.

Hang in there!
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#4 mela14

 
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Posted 15 December 2004 - 07:23 PM

Thanks for the well wishes and the kind words. I guess I have no choice but to give it more time. It's only been about a month and I've had a few mishaps along the way. also, the other food intolerances just flared things up. I'm thinking of doing the York testing for other food intolerances.
I just want my gut to calm down!
Tomorrow is another day so we'll just start again.
Thanks guys ;)
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#5 kabowman

 
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Posted 16 December 2004 - 09:05 AM

My theory is that the gluten intolerance "masks" all these other intolerances and once that is gone from yor diet, the others appear more prominant. Again, just a theory...Kate
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-Kate
gluten-free since July 2004

Other Intolerances:
Strawberries and Banannas (2007)
Nitrates (April 2006)
Yeast (which includes all vinegar so no condiments) (Oct. 2004)
Peanuts (Nov. 2004)
Soy (Oct. 2004)
Almonds (Sept. 2004)
Corn (Sept. 2004)
Lactose/Casein (1999)

#6 burdee

 
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Posted 16 December 2004 - 10:29 AM

I agree that gluten intolerance symptoms mask other intolerances. After I eliminated gluten, I found I was also intolerant to dairy (verified by Enterolab antibody test) and soy (same symptoms as dairy). I suspect that the longer we have had undiagnosed celiac disease (gluten intolerance) the more likely we will develop sensitivities to other proteins (like dairy, soy or the other major allergens). However, I don't believe my 2 additional sensitivities will disappear anytime soon after reading Ron Hoggan's theory in "Dangerous Grains" that gluten, dairy and soy are diabetogenic proteins which influence type one diabetes. On my father's side of my family MANY had and died from diabetes. However, my mom seemed to have the celiac disease symptoms, so I suspect I got the celiac disease gene (also verified by Enterolab tests) from her. Great gene combination! <_<

The GOOD news is after I successfully 'sleuthed' and eliminated ALL sources of gluten/dairy/soy (including my digestive enzyme which contained 'barley malt extract' :o ), I am feeling better and better each day (NO pain, NO bloating, better 'regularity' and much less gas)!! :D Next week I will celebrate 8 months since I began to TRY to be gluten free, 5 months DF, 4 months SF. However, I had many accidental contaminations along the way, including my 3X daily gluten pills (digestive enzymes) :angry: !!

So if you're still experiencing symptoms, keep doing detective work to eliminate whatever bothers you. There are still LOTS of foods to eat, esp. naturally gluten-free fresh meats, fruits and vegies, which are healthier than processed stuff anyway. ;)
BURDEE
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#7 mela14

 
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Posted 16 December 2004 - 10:54 AM

Thanks Brudee,

I seem to be sensitive to a lot of the same things as you. Little by little i will learn what my body likes and doesn't like. At least I finally got to a point where I can see that lot of my GI problems are intolerances. Whereas before I wan't sure what direction I was going in. I was soooooo sick I thought I had to have parasites, viruses, something really bad....and was ready to take anything to kill whatever was living in my system. Now I realize It's not what I take but.....what I don't eat that is going to ultimately help me.
thanks,
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Mel
mela14@optonline.net

10 years of abdominal problems, incorrectly diagnosed with Endometriosis / suffered 7 surgeries. Total hysterectomy 2 years ago!
Fibromyalgia, Chronic Fatigue, Interstitial Cystitis ,IBS, Migraines, Primary Immune Deficiency to name a few. Finally realizing that food intolerances make them all worse!

#8 red345

 
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Posted 18 December 2004 - 06:22 AM

Mela, go with what your heart tells you.

Read Kaufmann's books (Doug). "The fungus link" is the best one to start with.
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#9 Grissomz

 
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Posted 31 December 2004 - 01:00 PM

I had major digestion difficulties even after the gluten-free diet. I have Celiac, and I just decided that maybe the body doesn't want any grains at all(something some professionals are saying). All the symptoms went away. Potatoes are the only starch I eat. I tried rice again and the symptoms came back about a week later..

Grissomz
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#10 Mballerina

 
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Posted 01 January 2005 - 01:46 PM

After I started the gluten-free diet i still had problems. I decided to eliminate all grains and that is when i discovered that i had additional allergies to milk and eggs and intolerances to nuts and mushrooms. I tried gluten again to see if maybe it was only an allergy or nothing at all and discovered that there are a few symptoms which only gluten causes and though i don't remember them when they are gone, they are very serious and debilitating when they are present.
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Magdalena (1st celiac disease, than the world)




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