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Member Since 01 Nov 2011
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#823195 Help For The Itching, Stinging, Burning, Pain Of Dh

Posted by on 12 September 2012 - 03:22 PM

I thought we should have a thread devoted to this subject. That way we can link to it for newbies instead of typing it all out again each & every time. I'm going to list the things I can remember people saying helped them. You all can expand on the thoughts/techniques.

Hot water irritates dh so shower or bathe with the coolest water you can stand.

Witch hazel helps to cool off dh especially after the shower or bath.

Ice packs on dh.

Vanicream is gluten-free & moisturizes, especially when the crusts/scabs are rampant. If you put Vanicream in the fridge it really helps cool when it goes on. Cromolyn cream is a combo of Vanicream & Nasalcrom which helps with the itch, sting, burn, pain of dh. Recipe is here:

Walgreens pain relieving ointment works great; contains 20% benzocaine. Orajel also contains same ingredient.

CVS Calamine Plus itch relief (pink).

Benadryl Extra Strength Itch Stopping Gel.

If you have spots that are isolated from others enough; you can put vaseline or neosporin on the spot & cover tightly with a band aid. It will itch, sting or burn intermittently for a day or two & then stop as long as you keep the band aid on it.

Sun seems to irritate dh so avoid getting sun on those areas.

Sweat or getting overheated makes the dh rage so try not to get it fired up.
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#819712 Salad Dressings (U.s.)

Posted by on 25 August 2012 - 11:24 AM

I just happen to know that Wish Bone Russian Dressing contains wheat. It was my hubs favorite dressing but it was clearly labeled as having wheat in it.
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#818947 Cross Contamination Question?

Posted by on 21 August 2012 - 01:15 PM

And Sage, b/c you have anaphylactic reactions this needs to be talked about. You are 14 & at that age where soon you will think about kissing & I don't mean kissing on the cheek right? You need to know that is not okay. That person is going to need to brush their teeth WELL & maybe even use mouthwash. This is to save your life dear. Anyone who is not willing to do that for you is not worthy of YOU.

My hubs nephew has anaphylactic reactions to --- everything --- wheat, dairy, eggs, nuts, bee stings, wasp stings ---- I think he lives on soy & I know that if someone has eggs for breakfast & then kisses him on the cheek his cheek breaks out big time. They have to brush their teeth & wash their face (food gets all around your mouth area) before they can safely kiss him on the cheek.
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#818619 Can I Eat Regular Oats?

Posted by on 19 August 2012 - 03:21 PM

Sage, without being tested it's hard to say if you are celiac or gluten intolerant. BUT your dad having celiac is a big clue. And just b/c you don't have big reactions doesn't mean you are not celiac --- just like your friend who is celiac & doesn't have big reactions. There are even what are called "silent celiacs" who have no reactions at all. But any celiac who eats gluten even cross contaminated oats is doing damage to their intestines & this is a very serious disease. There are many serious illnesses which can develop from this if one keeps eating gluten. Things like insulin dependent diabetes, lupus, lymphoma (cancer) & the list goes on & on; plus there are neurological things that can & often do happen. Celiac is a genetically inherited disease. Your dad has it. The odds are that you do too considering the reactions you are having at this stage of the game. I remember your posting before & most of what you told us then & about how much better you feel off of gluten. You said your family (parents) weren't really on board with you not eating gluten & that you had to buy your own gluten-free foods. This is very interesting that your dad has now tested positive for celiac. I hope that now the situation at home has changed somewhat.
And I want to add too that celiac, especially in someone your age, can go into "remission" at times which means you could eat gluten a year from now & have absolutely no reaction at all --- but that does not mean that damage is not being done to a celiacs guts & the rest of the body.
There are a couple ways you could go with this if you want to find out if you are or are not celiac.
1) You can do a gluten challenge which means eating gluten for a specified time & get the blood work done & an endoscopy.
2)Or maybe you should talk to your parents about seeing your dad's doc who dx'd him. It might be that doc will consider your reactions to gluten along with your dad's dx & do an endoscopy on you to see if there is visible damage to your villi & dx you based on that.
Honestly, since your reactions are not all that bad yet it might be best for you to do the whole thing --- the gluten challenge, celiac blood panel, & endoscopy. Also, if you have siblings they should be tested.
As eatmeat said --- the rash & hives you get could be the early stages of dh which is the skin manifestation of celiac disease. This could also explain why you do not have such strong reactions b/c most of us with dh tend not to have many GI symptoms & even when we do they are not as severe. BUT that does not mean damage is not being done to our guts b/c it is!
Sage, we would welcome your friend as well as your dad if either should decide to join us here. We are always happy to help.Posted Image
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#818415 I Made An Interesting Discovery Today!

Posted by on 18 August 2012 - 06:32 AM

Wow. What a surprise Lisa. I too see celiacs but they don't want to know about it. When I found out about myself I did look up my nephew sort of long lost b/c of my sister & my horrid relationship. I wanted to let my nephew know especially as he has a child of his own now. I can only give the information & then hope they have enough sense to watch for signs & heed them when/if they come.

When I contacted my nephew, he informed me my niece had died a few months prior. I loved her & we got along very well but she was having a "rough life" & it was hard to get in touch with her. All things considered when everything came to light --- I have no doubt my niece was a celiac.
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#818170 Testing After Being Gluten Free

Posted by on 16 August 2012 - 04:09 PM

My diagnosis, in my real, everyday world, began with an endoscopy exam. No need to be specific, when nothing is specific. ;)

Lisa, please re-read what i wrote & you quoted ----- I said "all but a FEW exceptions" --- that would be YOU.

And YES, we DO need to be specific. We are trying to get a consensus from the major celiac centers on what would be the time duration as well as the amount of gluten to be consumed for a gluten challenge in re: the BLOOD panel!

Somehow you always seem to miss the point. And when you reply you hardly ever make sense. Write in whole sentences explaining what the heck you are trying to say please.
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#818162 Testing After Being Gluten Free

Posted by on 16 August 2012 - 03:46 PM

And since we are on this subject.......

I posted this thread not long ago. A PubMed abstract of a study done by UofC.


Of course, this only deals with the GI's.
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#817806 Testing After Being Gluten Free

Posted by on 14 August 2012 - 04:03 PM

Thank you for the information & links Tom & I will agree that this subject requires further study & research by those who do such. And the study you cite says there were GI changes enough to make a dx. But let's examine further. The study involved 20 ppl. 1 of which was washed out due to not possessing the accepted genetic markers for celiac disease. So now we have 19 ppl. All of those 19 ppl were dx'd by biopsy by this team. And let's remember that this team IS doing a research project & therefore are being extremely careful in measurements & documentation. They are not your average GI whom we know is rather reluctant to even perform the biopsy in the first place & then only after the blood panel turns up positive. Plus, this team performed a biopsy at day 3 & again at day 14 which never happens in real life. So this team was measuring before, early on & at the end. They had careful measurements of villous height to crypt depth for comparison on 3 occasions during the study. If this type of measuring were done on every potential celiac out there in the real world by your average GI's then I'm sure we would have much more accurate dx's resulting.
Now, what the links you posted DO NOT state is that:

Patients also experienced a marked increase in levels of antibodies against tissue transglutaminase and deamidated gliadin peptides between baseline and day 14, although this did not reach statistical significance. Levels continued to rise after the challenge was completed.
The researchers observe that the timing of intestinal changes did not significantly correlate with those of serology, symptoms, or LAMA.
"If we accept that duodenal mucosal damage is the gold standard marker of coeliac disease activity, then it is clear that, despite out encouraging findings, improved non-invasive markers of coeliac disease activity are greatly needed for use in patient management and clinical research," emphasize Leffler et al writing in Gut.

Finally, noting that a minority of patients had no significant response to the 2-week gluten challenge, and that gluten sensitivity varied significantly among the group, they conclude: "An accurate, non-invasive measure of coeliac disease activity would be valuable in many respects and may allow the strictness of the gluten-free diet to be personalised without negative consequences. "

The above from: http://www.medwire-n...c_response.html

The op stated that they are going to the lab in 2 - 3 weeks for the test. Well, that obviously means the blood panel not an endoscopy w/ biopsy. So, the study you reference is not applicable in this particular instance.

The researchers themselves admit the need for improved, accurate, non invasive markers for ceilac disease.

And I think ALL of us will agree on that point.

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#816366 Interesting Reading On Dh

Posted by on 06 August 2012 - 05:19 PM

I made a post on another thread in the post dx forum & some there were saying they did not know much about dh 7 wouldn't mind learning more as well as wanting to know what the source was for things I stated. Here is my post, copied & pasted. I did not want to hijack the other thread plus this forum is the best place to discuss dh so I post the sources here.
My post from http://www.celiac.co...rd/page__st__30

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.

Now, here are the sources along with selected excerpts:

DH is diagnosed by a skin biopsy. Biopsy needs to be performed on uninvolved skin (clinically normal-appearing skin immediately next to an area of inflammation). False negatives may occur if a biopsy is performed on skin that is affected by the condition.

IgA antibodies must be present in the skin biopsy for a definite diagnosis (4). It is important the person continues to eat gluten as the gluten-free diet can cause false negative results.

The NICE guideline on the recognition and diagnosis of coeliac disease recommends that people with DH should be screened for coeliac disease. The gastrointestinal symptoms of coeliac disease can be mild and in some cases are not apparent at all. Less than 10% of people with DH have gastrointestinal symptoms characteristic of coeliac disease (1).

Clinically, 10-20% of patients with DH present with classic symptoms of malabsorption and another 20% are estimated to have atypical symptoms, but at least 60% of patients have 'silent' coeliac disease.

The presence of DH is a marker of coeliac disease that is independent of the severity of histologic coeliac disease or the intestinal symptoms.


And this entire article is interesting & really should be read in it's entirety as it relates to both celiac disease & dh. Read especially, the last 1/3 of it. And it will verify much of what I stated.


A novel hypothesis of autoimmune pathogenesis of
celiac disease consists of deamidation of wheat gliadin
by tissue transglutaminase, binding to HLA-DQ2 and
its recognition by gut T cells with subsequent production of epithelial damaging cytokines, matrix degrading
enzymes, and also IgA autoantibodies against tissue
In DH, a clinically silent but immunologically active celiac, disease in the gut could
produce IgA antibodies crossreacting with the connective tissue in the skin, a hypothesis presented already
for 30 years ago.
In contrast to the major progress
made in the characterization of the target antigens in
various autoimmune blistering disorders, such as pemphigus, pemphigoid, and linear IgA disease, one of the
main goals in the research on DH is still to resolve the
enigma of IgA deposition in the skin, what is the antigen, and does IgA have any role in blister formation.

Small Intestine
The occurrence of small intestinal mucosal abnormality
in DH was first reported in 1966, and shortly thereafter
it was recognized as gluten-sensitive and indistinguishable from ordinary celiac disease.
To date, it can be
concluded that all children and adults with DH have
celiac disease though most of the patients have no
gastrointestinal symptoms or signs of malabsorption.
The enteropathy in DH varies from flat mucosa to partial villous atrophy in about 75% of the
patients, and the remainder show minor morphological
changes and increased counts of intraepithelial lymphocytes.
At present, it is well established that
the patients with overt gastrointestinal symptoms represent only the top of the celiac iceberg and that there is
latent form of celiac disease showing only minor mucosal changes.
A certain population of intraepithelial
lymphocytes, CD4-, CD8-negative, gamma/delta T cell
receptor–bearing lymphocytes are closely associated
with celiac disease and DH.
The activation of these
gamma/delta T cells, exclusively found within epithelial tissues such as intestine and skin, seems to be
peptide and HLA independent.
Therefore, constant
presence of high numbers of gamma/delta T cells in the
epithelium of gluten-sensitive enteropathy suggests
that these cells have either a signaling function to immunocompetent cells or modulating function on epithelial cell growth.

Although the patients with DH have increased incidence of lymphoma and autoimmune diseases,
general mortality was not increased either in an English or
Finnish patient series.

During the last 30 years the research on DH has brought
up several important findings for dermatologists and
scientists. The change from a blistering dermatological
disease to a disorder in which both the skin and gut are
sensitive to cereal proteins, and also treatable by a GFD,
has been dramatic. The linkage to celiac disease revealed that DH is also a genetic disorder having a
strong association with HLA-DQ2 and a tendency to
cluster in families with celiac disease. Though granular
IgA deposits in dermal papillae are pathognomonic for
DH, and not present in the skin of patients with celiac
disease, their antigenic specificity remains to be elucidated in contrast to autoantibodies in the linear IgA
disease. The only circulating IgA autoantibody detected
to date in DH is the antibody against tissue transglutaminase. This antibody is, however, specific for glutensensitive enteropathy (i.e., for celiac disease), and it
may be involved together with DQ2-restricted, gliadinspecific T cell response in the pathogenesis of the gut
lesion. This novel hypothesis on the autoimmune
pathogenesis of gluten-sensitive enteropathy raises the
question if there is also a dermal autoantigen in DH
related to tissue transglutaminase.


And there is this:

Role of gluten and association to coeliac disease

The first suggestion that patients with DH also have an enteropathy identical to coeliac disease (celiac disease) was made in 1967. This was confirmed by showing the enteropathy cleared with gluten withdrawal from the diet and recurred when gluten was reintroduced. It was subsequently shown that all patients with DH have evidence of a gluten enteropathy. However, in the majority of patients the enteropathy is mild and does not give rise to symptoms such as abdominal pain, weight loss and diarrhoea. Thus, all patients with DH have associated celiac disease although it could be described as latent celiac disease in the majority.


The diagnosis of DH is made by a simple skin test. A small piece of skin approximately 3 mms in diameter is taken from an unaffected area, ie. normal looking skin. The skin is examined for the presence of a substance called IgA (immunoglobulin A) and is found at a specific site in the skin. Although the test is simple, it is important a laboratory experienced in the procedure undertakes the examination of the skin.

The diagnosis of DH can also be confirmed with the same tests as used for diagnosing celiac disease, ie. a small intestinal biopsy and blood tests looking for specific antibodies, called anti-endomysial and tissue transglutaminase antibodies. Occasionally in DH, the blood tests may be negative because their positivity correlates strongly with the severity of the intestinal lesion.


And then there is this one:

While DH is a known symptom of celiac, many patients with DH will not develop any classic digestive symptoms. This particular skin manifestation often does not correlate with a positive celiac diagnosis via biopsy. In fact, up to 20% of patients actually have normal small intestines when examined.
Some patients may exhibit signs of celiac, such as anemia or osteoporosis, at the time of their diagnosis.

How is it diagnosed?
o Skin Biopsy
o Misdiagnoses
While 70-80% of DH patients have higher than normal blood IgA- tTG antibody levels, a typical celiac panel (blood test) is not considered sufficient or reliable enough to properly diagnose patients.
Instead, doctors diagnose DH by examining the dermal papillae (cells under the top layer of skin), and use a process called direct immunofluorescence to detect for neutrophils and granular IgA deposits in the skin.
Granular IgA deposits (which indicate DH) appear in a very distinct pattern when inspected via immunofluorescence and appear in 98% of patients with DH - making it the gold standard in gaining a diagnosis.
These types of skin samples are collected by performing a biopsy, which involves incising tiny portions of unaffected skin positioned immediately next to reddened or blistered areas.
Inflammation and blistering of skin (likely caused by itching or scratching) can alter the look and concentration of the IgA deposits present in patients with DH, affecting the patient’s ability to receive a proper diagnosis. Because of this, it’s very important that unaffected skin be collected during a skin biopsy.
DH can often be misdiagnosed and frequently confused with skin conditions such as: allergies, bug or mosquito bites, contact dermatitis, diabetic pruritus, eczema, herpes, hives and psoriasis.
The lesioning of individual blisters can often lead to this misdiagnosis, as scarring can cause a change in presentation, making it difficult for doctors to differentiate DH from other skin conditions.



Our data suggest that antibodies to eTG are the most sensitive serologic marker in treated and untreated patients with DH and confirm the central role of eTG in the pathogenesis of this disease. From:

The novel anti-GAF3X ELISA shows a higher sensitivity to detect celiac disease-associated autoantibodies in patients with DH compared with tests using nGli, tTG, or endomysium as substrates. From:

Virtually 100% of patients with DH have celiac disease, though the intestinal lesion is usually milder than most patients who have predominantly gastrointestinal complaints. The lesions of DH are very sensitive to even the ingestion of small amounts of gluten. Other dietary factors, for example iodine, may exacerbate the rash or prevent its healing. The rash is however dependant on the ingestion of gluten. While Dapsone will control the skin lesions of DH, a gluten-free diet allows Dapsone to be discontinued, healing of the intestine and reduction in the risk of the development of lymphoma that is increased in patients with DH. From:

And from our own celiac.com:
With dermatitis herpetiformis the primary lesion is on the skin rather than the small intestine. The degree of damage to the small intestine is often less severe or more patchy then those with only celiac disease. Both diseases are permanent and symptoms/ damage will occur after comsuming gluten.

And from the Mayo Clinic:

"Circulating IgA endomysial antibodies (EMA) are present in 70% to 80% of patients with dermatitis herpetiformis or celiac disease, and in nearly all such patients who have high grade gluten-sensitive enteropathy and are not adhering to a gluten-free diet."

A negative result (absence of circulating IgA-endomysial antibodies) does not exclude the diagnosis of dermatitis herpetiformis or celiac disease.

And from an article on celiac.com:

Endomysial Antibodies:

IgA class anti-endomysial antibodies (AEA) are very specific, occurring only in celiac disease and DH. These antibodies are found in approximately 80% of patients with DH and in essentially 100% of patients with active celiac disease. IgA endomysial antibodies are more sensitive and specific than gliadin antibodies for diagnosis of celiac disease. Antibody titers (dilutions) are found to parallel morphological changes in the jejunum and can also be used to reflect compliance with gluten-free diets.

And from: http://www.arupconsu...mis.html#tabs=3

Celiac Disease Dual Antigen Screen with Reflex 2002026
Method: Semi-Quantitative Enzyme-Linked Immunosorbent Assay
Diagnose celiac disease in association with suspected or known dermatitis herpetiformis

Components include celiac disease dual antigen screen; tissue transglutaminase antibodies IgA and IgG; and gliadin peptide antibodies IgA and IgG
Monitor celiac disease and dermatitis herpetiformis during treatment
May be negative if patient is following a gluten-free diet

Some patients with dermatitis herpetiformis will also be negative
Monitor increased IgA endomysial and tissue transglutaminase antibodies

And from Medscape: http://emedicine.med.../1062640-workup

Serum markers, such as IgA endomysial antibodies, are negative in as many as 10-37% of patients with dermatitis herpetiformis.[28] Arguments have been made in favor of testing for tissue transglutaminase for diagnosis,[29] but tissue transglutaminase enzyme-linked immunosorbent assay positivity can occur in many autoimmune diseases because of impurities and cross-reactivity.[30]
The diagnosis is made after observing characteristic findings from skin biopsy specimens. The biopsy sample should be taken from the edge of a lesion for hematoxylin and eosin staining and from normal-appearing perilesional skin for direct immunofluorescence staining.

Results of direct immunofluorescence of lesional skin are often falsely negative. The vigorous immune response degrades the IgA antibody at the site. Therefore, biopsy specimens for the direct immunofluorescence studies should be taken from healthy-appearing skin.

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#815371 Question For Those Of You That Have Dh That Is In Remission, Healed, Cleared....

Posted by on 01 August 2012 - 01:17 PM

Okay. The derm is obviously off on some things then.

As far as Synthroid goes (my hubs takes Levothyroxine) --- if we want to get really technical --- iodine is not added to the medication but rather that the hormone itself contains iodine. So, in short YES, there is iodine in there. I called a pharmacist to ask if there was iodine in it -- actually I called 2. 1 didn't know & the other said no.

And here I will quote what I learned from Skylark:

The iodine in T4 is covalently bound & wouldn't bother dh but as your body metabolizes T4 (4 iodine atoms) to T3 (3 iodine atoms) & T2 (2 iodine atoms)it removes iodine atoms & those would be released into the bloodstream. It's a very small amount of iodine relative to eating something like seaweed but if you are hypersensitive it could be the problem.
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#815369 Irishheart, Come Home!

Posted by on 01 August 2012 - 01:06 PM

IrishHeart is like the heartbeat of the forum. Who knows how many lives she has saved?
She's like a beacon of hope to all who enter here.

She's stern when someone is being pig headed, she's suportive when someone feels weak, she has a great sense of humor, and is so giving of her time and knowledge. She has a lot of hard earned knowledge! She has come from the brink of death..and her struggles continue, but she's always so giving to others.

Bartful said it best..she lets others know that she knows them, and that's so comforting. :D

I couldn't have said it better myself!

What they all said!

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#815141 Question For Those Of You That Have Dh That Is In Remission, Healed, Cleared....

Posted by on 31 July 2012 - 05:45 PM

Mine isn't in remission, healed, cleared YET. But I see what you're asking. And while other things may make you flare up like iodine & salicylates; those things aren't going to "start your clock back at day 1". Gluten is the enemy & I believe a glutening will set you back. Will it set you back to day 1? I don't think so --- not unless you got heavily glutened & it happened often. Or if you keep getting cc'd on a regular basis. Every time we get glutened or cc'd it is going to put IgA in our skin & that's where the rash comes from.

You're lucky that you have a good derm who understands this stuff. Don't be afraid to ask him questions like what you just asked here. Sounds like he's a good guy.

And just like your derm said --- we can have flare ups for no reason or trigger at all until all that IgA gets out of our skin.

I know, I'm with you sister, I'm sick of trying to figure this out all the time too. Always questioning -- why this flare? Too much iodine or too many sals or too much stress or is this one just a flare b/c that's what dh does. Posted Image
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#814910 Outrageous Things I Have Said And Done!

Posted by on 30 July 2012 - 05:55 PM

I buy the envelopes that self seal. You know, they have that peel off strip. They really don't cost much more & I don't get glue all over a sponge nor have that awful taste on my tongue.

I have been enjoying the repartee but back to the OP's questions as I know it is truly a concern for her.

1D, I will admit that the things you proposed would sound weird to me if I didn't have celiac disease myself. I'll go one further & say that they would sound more than weird to me. I would call them over the top. All except for the last one --- the barley which gets your arms when you weed. That one would not sound odd to me at all.
However, if you were a family member or a dear friend & you explained things to me about the disease then they would not seem so weird. In fact I could understand them all except maybe the whiff of vinegar.

I think you have to have this disease or an anaphylactic reaction to some food or substance in order to truly understand how severely it can affect us. I think that's something we are just going to have to learn to live with.
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#814779 My Biopsy Word For Word

Posted by 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 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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