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Member Since 01 Nov 2011
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#814779 My Biopsy Word For Word

Posted by squirmingitch on 30 July 2012 - 08:58 AM

I will also add a tidbit of information here. In the case of celiacs with dermatitis herpetiformis; we test negative on the blood panel even more often than celiacs with the GI issues. We also have patchier damage in the gut so it's harder to find with an endoscopy/biopsy. Thus, it's even more difficut for us to get an "official" dx. We can have the area adjacent to a lesion biopsied but we have to have been actively eating gluten just like for the blood panel & endoscopy PLUS there is a 37% false negative return on the biopsy. AND you had better have a derm who REALLY knows their stuff doing the biopsy. All in all; it's harder than heck to get a dyed in the wool dx.
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#814249 Losing Hope...

Posted by squirmingitch on 27 July 2012 - 03:08 PM

kswan, SOY can make you bloat like crazy! Many celiacs have problems with soy so if you are eating anything containing soy you can try elimiating that from your diet & see what happens. Soy makes me bloat like you wouldn't believe --- like I'm 15 months pregnant!!!! I will bloat so bloat so badly that I literally feel like my abdomen/stomach/intestines are going to explode & there will little pieces of me splattered all over the place. I'm sorry if that's too graphic but that is exactly the way soy bloat can make me feel.

Personally, I would take the advice of IrishHeart, mushroom, eatmeatforgood, Gemini, bartful, FernW, justlisa, GFinDc, MitiziG, beachbirdie, TiaMichi2 & jestgar. These people know what they are talking about. And they can get very passionate about it but that is only because they have been at death's door from celiac disease & doctors who don't know what they are doing/talking about OR have seen enough on this board of people who have gone on needlessly suffering & doing damage to their bodies b/c of inept doctors. The very same kind of doctors who think celiac is a fad. The very same doctors who think "you don't get celiac at age 50" --- actually you usually don't "get" it at 50 --- it's BEEN there for years & years & years UNDIAGNOSED.

*edited to add jestgar*
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#813934 Please Help.....bloated

Posted by squirmingitch on 26 July 2012 - 10:59 AM

Are you eating anything which contains soy? Soy can cause big bloat problems.
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#812575 Some gluten-free Bread May Not Be Gluten Free!

Posted by squirmingitch on 21 July 2012 - 04:48 PM

Also quoting from your ref. to the Livestrong article:

If you have celiac disease, your body can't safely digest gluten from wheat, rye and barley. However, the zein form of gluten in corn is safe for individuals with celiac disease.


However, the gluten found in corn will not cause this autoimmune response and your villi remain healthy.

And the references for the article are:

Celiac Sprue Association: Treatment of Celiac Disease
National Foundation for Celiac Awareness: The Gluten-Free Diet
Celiac Sprue Association: Gluten-Free Diet: Grains and Flours
The University of Chicago Celiac Disease Center: Gluten-Free Diet
MayoClinic.com: Gluten-Free Diet

DW in NYC, please know that we are not against you. We are aware people & are not being "hoodwinked" on the subject of corn.

I really think you are upset right now & more than a little anxious. This DOES happen when newly gluten free. As has already been mentioned part of gluten withdrawal is brain fog &; I think perhaps you are getting a bit mixed up. I do not say this to infuriate you! I know this is true b/c I had it; and sooooo many others here went through it. Please try to calm down &; look at this subject on a new day in a new light.

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#812187 I Got Officially Dx'd Today

Posted by squirmingitch on 19 July 2012 - 05:36 PM

Thanks everybody!!!!!

Before I forget --- the doc actually said to me that the testing for celiac was so inaccurate & there is a too large % of false negatives in the celiac panel as well as a worse % for the dh biopsy. And then he went on to talk about how the endoscopy misses so many celiacs also. It was like he had been reading this board & saying all the things we say! I was stunned to say the least.

Yes, IH, it is incredibly validating to be told what we already know.

But I'll tell you guys --- it's so weird --- I suppose I should be "over the moon" but the truth is that I was perfectly content & quite comfortable with being self dx'd. I'm sort of a rebel if you will and I did not go with the intent of getting a dx. I only brought all those records & such to get him to take me seriously enough to agree to run the tests I knew I needed & so many have had problems getting their doc to run. I did not have a single doubt in my mind that I was celiac with dh. And I could live with that forever. And woe be unto the person who doubted me. I would tell ppl I had an official dx with no problem if they should be "that kind". And seriously, even if you end up in the hospital ---- when have you ever had to prove you had a dx of this or that or the other disease in your entire life? They don't ask you for documentation of your dx. Do they ask you for proof you are diabetic? No. You say it, you ARE it.

Just like life isn't it? When you don't give a darn about having an official dx, one drops right in your lap. Yet some search & search & search to get an official dx & can't get one no matter what. Life's weird that way.

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#812158 Please Take A Peek For Me?

Posted by squirmingitch on 19 July 2012 - 03:05 PM

Everything you have described IS consistent with celiac! Your friend doesn't know what she's talking about just like so many doctors don't know. We've had umpteen hundred overweight ppl here who have been told they can't possibly be celiac b/c celiacs are skinny. THEN we've had another umpteen hundred ppl on here who are skinny who were told they are just anorexic b/c celiac is RARE. 1 in 130 ppl is NOT rare!


No one knows your body like you do --- NO ONE.

And expect lots more ppl to be skeptical & they will ask you if you have a Dr. dx. You know what? Just tell them you do. Shut them up. The riot is THEY probably have celiac & don't know it.
There is also something known as "silent celiac" where the person has NO outward symptoms at all but still the damage is being done inside them & it's real. There are a # of them on this board who found out completely by chance getting tested for something else. Furthermore, ppl with dh tend not to have GI symptoms or GI symptoms which are not severe --- that's b/c it's in our skin but our guts are still being damaged.
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#811570 No Iodized Salt In Hormel Products

Posted by squirmingitch on 17 July 2012 - 05:53 AM

I called Hormel yesterday to ask if they use iodized salt in their Cure 81 Classic Dinner Ham. 1-800-523-4635
The lady read from their company statement that they do not use iodized salt in ANY of the Hormel products.

So those of you avoiding iodine can feel good about Hormel.
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#811085 Celiac And Time

Posted by squirmingitch on 14 July 2012 - 06:28 PM

I'll go with eatmeat & say I know from personal experience that you can go 55 , well, no, my hubs is 64, years without knowing you are celiac.

And we eat whole foods too. Our food bills went down also.
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#810864 Am I Hurting Myself?

Posted by squirmingitch on 13 July 2012 - 03:21 PM

YES! You are doing damage. Your reaction is no indicator of the damage being done. You need to be vigilant --- very vigilant! This is serious business & every time you get glutened or cc'd then you risk your health -- now & in the future.

I would NEVER say to myself that it's okay for me to get cc'd to the point of 20ppm --- NEVER! That is for testing purposes of gluten free food & does not mean that we can gauge how much cc equals 20ppm.
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#809474 A Relative Is Diagnosed Celiac- Won't Go Gluten-Free

Posted by squirmingitch on 08 July 2012 - 06:35 AM

Perhaps the only thing you can do now is to print off some of the stories of some of the ppl on this board who were way worse off than Peggy is now when they found out they were celiac & went gluten free. Then next time you visit Peggy, you could quietly leave those print outs at Peggy's house so she will be sure to find them. when she's all alone & finds them hopefully she will read those stories & see how these ppl have healed.

Everyone who has stories like that (like you IH) could leave a link to the post where your story is & Leah could then have easy access to them in order to print them out.

Otherwise Leah, my heart breaks for you & Peggy & for the suffering you go through watching a loved one destroy themselves. But I agree with everyone else here. Bottom line --- Peggy has to want to save Peggy.
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#808741 Can Someone Explain The Iodine Thing?

Posted by squirmingitch on 05 July 2012 - 09:53 AM

Here are some links with info. on the iodine connection:


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#808698 Can Someone Explain The Iodine Thing?

Posted by squirmingitch on 05 July 2012 - 06:49 AM

Iodine affects both myself & my hubs in a big way. There have been many here who have problems with their dh in relation to iodine. But that's not going to do much good unless you are completely gluten free.

Iodine has been medically recognized to aggravate the dh. If you go low iodine then you will probably start noticing a difference within about 3-4 days & get much better in 10 days.
Here is a link to the low iodine diet so you can see what foods you need to eliminate. Your vitamins may contain iodine so check them. I use Solgar brand "Vitamins Only" which contain no iodine, soy, gluten, artificial flavors or colors, etc...


After iodine, salicylates are the next big factor affecting dh flares & aggravation. Here are links about salicylates (sals).


I can't find the link to the reference right now & have to run but I read one medical paper that stated in essence IF one could eliminate ALL iodine then dh would not present even in the presence of gluten. It's like gluten is what causes dh but iodine fires it up.
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#808516 Very Frustrated

Posted by squirmingitch on 04 July 2012 - 09:26 AM

And to make sure you get the FULL celiac panel; here it is:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

The DGP test was added recently to the full panel.

Also can be termed this way:

Endomysial Antibody IgA
Tissue Transglutaminase IgA
Total Serum IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG

If they don't do that then they are just wasting your time.
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#808417 Discouraged About My Diet - Need Support Please

Posted by squirmingitch on 03 July 2012 - 06:19 PM

And for a whole month I thought I was eating gluten free when I began the diet. Then at the end of Nov. my hubs said, "Hey, this says it has wheat in it". Grrrrrrrrrrrr, one thing in the kitchen cabinet I thought I had checked but obviously hadn't! So, my first month totally down the drain. Start at day one again. Boy, was I ever depressed!
We all do it in the beginning.
Lighten up on yourself. You'll get there. I did.Posted Image
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#807202 Another Confusing Discrepancy Between Blood Tests And Biopsy Results

Posted by squirmingitch on 29 June 2012 - 04:20 AM

You mentioned gluten-free corn flakes. If you are already gluten-free or if you were gluten-free or gluten light prior to the blood work OR the endoscopy then that can skew both tests to negative.
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