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squirmingitch

Member Since 01 Nov 2011
Offline Last Active Private
*****

#890036 Do You Take Your Celiac Disease Seriously?

Posted by squirmingitch on 28 September 2013 - 12:03 PM

ABSOLUTELY! MY HUSBAND & I BOTH TAKE IT EXTREMELY SERIOUSLY. And we both happen to be some of those that Barty talked about who have dh. I'm not saying celiac disease without dh is any less serious than having dh added into the mix but dh sure will make you wake up & smell the roses!!!!!

And I choose to help people who come here, especially to the dh forum, because when I needed it, there were those here who helped me & I wish to pay it forward but those are not the only reasons..... I also have a real desire to help those who have dh & are maybe not as bad off yet as I was/am. I hope to help them understand what lies in store for them for years if they do not take the diet seriously & to help them understand that going gluten-free is not a magic, instantaneous cure for dh & to help them understand why dh will/can hang around so long after one is gluten-free.

I can't tell you how many celiacs who have been gluten-free for years have come on the dh forum with the rash after having gotten accidentally glutened. I will say that it is very difficult to have any sympathy for those who come on saying they cheated with a smiley & crying the blues because they now have dh. 


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#885320 Why Is Wheat Doing This To Me If I Do Not Have Celiac And Am Not Allergic To It?

Posted by squirmingitch on 22 August 2013 - 09:25 AM

It doesn't sound like dh. However, I won't say it isn't pre dh. DH is insanely itchy --- absolutely drive you nuts, make you want to peel your skin off with a knife, insanely itchy 24/7. And dh doesn't present & then the next morning you are fine. What's happening to you doesn't add up as dh; at least not at this point in time. What is pre dh & could it be that? Quite frankly I can't say. There are no med texts or studies that I have found on the subject of pre dh.

GFinDC is right though. Ppl with dh test false neg. on the celiac blood panel 60% of the time. Also, DQ2 & DQ8 are not the only celiac genes as some studies have shown. They are by far, the most common but there are studies out there that have identified other genes, mostly ppl in other countries, or from other ethnic backgrounds.

One thing is certain though --- you have a problem with gluten. We have a saying:

If it makes you sick, don't eat it. 

 

I wish I had better answers for you livelaughlove but I don't. And I wouldn't be so quick to think the problem lies with some other protein in wheat. Tests can be mixed up, screwed up, performed incorrectly, ordered incompletely, interpreted incorrectly, & are not reliable 100% of the time. You are having a reaction to wheat ---- period. Your body is verifying that & that counts more than all the tests in the world.


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#884329 Dapsone ~ Members Taking Dapsone Please Respond.

Posted by squirmingitch on 14 August 2013 - 12:51 PM

RFJ, have you been eating gluten all along while taking Dapsone? You say it's impossible to eat gluten-free with your work schedule. How so? Do you realize that every time you eat gluten your villi are being damaged among other things? I'm not honking on you; I just want you to understand what you risk & maybe we can help you figure out how to eat gluten-free with your work schedule.


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#882384 I Have So Many Questions

Posted by squirmingitch on 01 August 2013 - 03:59 PM

You hit the nail on the head when you say this is such an emotional roller coaster!!!!!!!!!!!!!!! It screws with your head as much as it screws with your skin. And you get better & then you get a flare & you wonder if this did it or if that did it or if somehow you got a molecule of gluten or, or, or, or, until you're insane which stresses you out & then you flare worse. Been there, done that. Even now sometimes I do that but it's rare b/c I have learned that this stuff has a life of it's own & as long as we're eating gluten-free & being very careful about it then it isn't what we're eating --- it's the rash being it's infuriating self. In addition to being gluten-free & low iodine, I ate low salicylate (sals) for 9 months b/c I thought sals were making things worse. Nah. I flared, I got better, I flared, I got better, I flared until 1 day after 9 months of such a limited diet I said, "Screw it! I'll eat sals & find out!!!" I ate sals & nothing bad happened to me; nothing that hadn't been happening all along so I have been eating sals since.

I certainly don't want to depress you but I need to tell you of some of the experiences of others who have been on here & no longer post. Some have gone 3 years but when I say that; they said they still get 1 or 2 blisters or lesions. Some have gone less than 2 years & been fine. Some have gone only months (lucky ducks!) & cleared up & been fine. I am now 20 months & I only wake once most nights itching but it's not that bone deep itch & I am able to go right back to sleep. Blessed sleep! There are nights when I don't wake at all. YAY! But I can tell at 20 months in that unless some miracle happens & this stuff leaves me overnight; I will be over 2 years & still dealing with this. Such is the way of it for some of us. I can say that it's been 5 months since I had that scratch right down to your bones itch. That's major progress! I now go for hours at a time without itching. There are days when I don't get a new blister or "bite". Lately it seems to have set up a real pattern (which was NOT the case until around April) where I seem to flare for 2 days & then start calming way down on the 3rd day & then the next day I will be really healing with no new places & I seem to go 3 days that way & then the flare again & so on & so forth running in 3 day increments.

It takes longer for some of us. I am 1 of those. But I can now see the end of the tunnel & there IS light. :)


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#882365 I Have So Many Questions

Posted by squirmingitch on 01 August 2013 - 12:47 PM

Abby honey, I'm reading. I'm just so swamped right now. I feel your pain hon, I really do. What you are describing is exactly what I have been going through since Dec. 2011 when I went gluten-free. It gets better & then it flares. I have been & remain so pristine with my food to make sure I do not get the tiniest bit of gluten. BUT I HAVE gotten better!!!!!! I'm having another flare right now but it's not as bad as previous ones. Each time is not as bad. I did however, have a horrid, awful flare last Sept. which got worse & worse through the winter & it finally calmed down in the 3rd week of March. I was stressed to the max. house hunting, making offers, having 1 fall through at the last minute when we found the property was 3/4 of an acre smaller than advertised, 700+ s.f. smaller than stated & to boot the septic & drain field encroached on the neighbors property. We had to begin our search all over again. Stress affects my dh BIG TIME.

 

I have to go do dinner now but will try to get back to you afterward. 


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#880840 Gluten-Free For 20 Years With Rash From Hell

Posted by squirmingitch on 23 July 2013 - 05:47 PM

Check that Almond milk for carageenan!


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#879119 I Have So Many Questions

Posted by squirmingitch on 11 July 2013 - 05:50 PM

Abby, I do not want you to get discouraged. I did not put the info. out there about it taking 2 yrs. or more to be free of the rash in order to scare you. I put it out there to let you know that you can have flares even gluten-free. If I did not make you aware of that & you go along & then get a flare then you could think you don't have dh b/c you are gluten-free & here it is, the rash flaring. It's important to know that can & does happen. 

 

Now, you were gluten-free & the rash resolved until you got into the seafood which = iodine overload. I take that as a very good sign in your case. So do not despair. You may not have a long haul with this stuff.

 

Looking back, in hindsight, now that I know what I have, I can clearly see that I was a celiac even as a kid. As a teen I could not tolerate beer. it gave me terrible gut issues & I refused to drink it b/c of that. So I have had this building in my system for 40+ years or more. I am 56 now. The rash began to present for me around 8 years ago. Mild, very mild at first. So I can see now that I was a celiac with GI issues & then it morphed into the rash.

 

Yours may be a totally different case.

 

I am getting better! Where the individual lesions or blisters used to last 4 to 6 weeks; they now are down to 1 - 4 days before they begin healing & the healing is much faster. I mainly only have it on my legs from the knees down & my ankles, feet these days. I get a few spots various places on my body but they are short lived & they don't itch as much. I AM healing. I WILL get there. 


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#879108 I Have So Many Questions

Posted by squirmingitch on 11 July 2013 - 04:26 PM

Okay, take a deep breath, & then another & again. Now, calm down. You may not have the dh flare or persist for 2 years or even 1 year. Some do, some don't. We're all hoping you are going to clear quickly. Prickly did once she figured out it was dh & went gluten-free & then went low iodine for a bit. 

And there's no way to say if your flares will be mild or not nor how often it will happen.

Just think positive Abby. That's the best way to let the stress go. You have gone gluten-free & that's THE treatment. You are on the road to recovery. Don't think about farther than tomorrow.

 

Dapsone.

Dapsone is scary & I swore I would never try it. but then I had a viscous, horrid outbreak & I would have taken it if I could have gotten some. And it's quite possible that I would have an anaphylactic reaction to it since I am allergic to sulfa drugs. Many have tried it & not been able to tolerate it. Others have used it & had no problems with it. Prickly tried it I believe -- she can tell you about her experience.

 

Try this forum for a good doc in your area:

http://www.celiac.co...isease-doctors/

 

I did a quick search of that forum via Google & came up with these possibilities that you can read:

http://www.google.co...land&gsc.page=1

 

And you might Google celiac support groups in Portland ---- I believe there is a major group there --- you could contact them for a list of docs.

 

Hair

Celiac disease is associated with alopecia. Most ppl who have had hair falling out have recovered it after time being gluten-free. I had mine falling out when the lesions were so bad in my scalp. It grew back. I have always had extremely long hair --- to the bottom of my butt. It was weird b/c for several years it was getting shorter. It was barely reaching the top of my crack. Guess what? Since going gluten-free it has begun growing again. It is now back down to the bottom of my butt. AND it's shining again! YAY!

 

You may find a lot of things you didn't even notice or thought were mol normal improving over time. It's amazing how this stuff affects every single cell in our bodies it seems.

 

I was dxc'd with DJD & was getting epidurals for the pain. My pain has gone so drastically since being gluten-free! And I haven't had an epidural. How about them apples? I was eating gas X like candy & still belching like a sailor --- no more! I had continual indigestion --- no more. Lots of things Abby, lots of things.

 

Smile hon. You're strong & you will come out the other side. You will have moments of self doubt & you will have times of great satisfaction. We're here to hold your hand if you want to have a pity party. We all have had 1 or more ourselves.


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#878942 I Have So Many Questions

Posted by squirmingitch on 10 July 2013 - 07:15 PM

Abby,

First, welcome to the board!

Second, Great big hugs! ((((((( ABBY)))))))))))

Third, I'm so sorry you have been put through all this by your doctors as well as having the rash itself which is hell.

Fourth, I am not a betting woman. I hate to risk losing money so I very, very rarely put it on the line. IOW, it takes a sure thing before I will lay my money out.

Now I will say that I would lay down money that you have dh. Without a second thought.

 

Okay, I've had a long day & am tired so I'm sure I will say things not in the best order like I would if my mind were fresh. 

 

Thank you for giving us so much info. on your symptoms & what's been done & not done & for the excellent photos.

 

One question..... When they took the last biopsy which was taken correctly had you been using either topical or oral steroids within the last 2 months prior to that biopsy? If the answer is yes then the biopsy is a wash. The steroids will turn up a negative. Don't bother to tell your docs that b/c it's clear that at this point they aren't listening so you will just be banging your head against a brick wall.

 

When that biopsy was done you had been gluten-free for 11 or 12 days. And that alone, is enough to turn up a negative biopsy. The fact also that you have been what we tern gluten light could be a factor also but there are no med. publications that I have found that research the effect of being gluten light on biopsies. 

 

You say they did a TTG blood on you. Do you have copies of the bloods they did on you? If not, get them. If they did not do ALL of the bloods listed below then they did not do the current FULL celiac panel.

 

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 
GLIADIN IgG
GLIADIN IgA
Total Serum IgA 
Deamidated Gliadin Peptide (DGP) IgA and IgG
 
Even if those tests were done & they came up negative, only 40% of those of us with dh test positive on the celiac blood work. That means 60% of us test false negative.
 
The brown spots (sometimes grey, or purple & sometimes white) will fade over time & your skin will go back to it's normal color. it takes a while ~~~ mine have taken 6 months & I had the worst outbreak of all 9 months after being strict gluten-free. I suspect those spots will take longer than the 6 months I have previously experienced. 
 
YES! You can continue to have the rash after going strict gluten-free. You can have it for 2+ years & I really hate to say this but there are texts out there that say for 10 years. You see, the antibodies get deposited under our skin & we will not be clear of this until those antibodies have gone. There are lucky ones who clear pretty quickly ~~~ in months ~~~ & then there are those of us who battle it for years. 
 
Going low iodine can make a difference & does for most of us. You already mentioned you know about that. Good! You've been doing your homework! :) But just in case you miss things; here is a link to the low iodine diet (don't eat the gluten things of course):
 
 
Here are some other links you can read. The first one is lengthy & ponderous but will explain much.
 
Interesting Reading on DH:
 
 
 
Descriptions of DH Types:
 
 
 
Help for the Itching, Stinging, Burning, Pain of DH:
 
 
 
DH Photobank:
 
 
 
I include this even though your SO is gluten-free b/c it never hurts to review the rules & check to see if you've missed something.
 
Newbie 101 for celiacs
 
 
Can you get a new PCP? Does your insurance require a referral before you can see specialists?
 
How important is it to you to have an official dx? If you really want one then you will have to go back to eating a normal gluten diet & with dh that is...... well, I wouldn't do it for 10 million $! You will be putting more antibodies in your skin as well as doing damage to your body (gut, neuro, etc..). 
 
And stress is known to make everything worse so it follows that it will make the rash worse. I know it affects my rash tremendously!
 
AND prednisone or any other oral steroids will/can help a  great deal with the rash BUT when you stop taking them I warn you the rash will come back with a vengeance! So many of us have been there, done that!
 
NSAID's will aggravate the rash. If you have to take anything at all then take Tylenol. Personally, even that makes my rash worse if I take more than 1 or 2 in an entire 2 week period.
 
I think these things will get you started for tonight. I will be back tomorrow unless I get derailed by things & if I do I will be back the next day & give you some other thoughts & info.

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#876806 We Need To Start A Thread On Stupid Stuff Doctors Say!

Posted by squirmingitch on 26 June 2013 - 05:58 PM

My hubs had bladder cancer & every year he has to have a cystoscopy to check for any recur. Now, this Urologist is really, really good at urology; he really is. Okay, so last year we did not know my hubs had celiac disease. We tell the doc he does now. There is always an antibiotic prescribed after a cysto to make sure no infection happens from the procedure. We are telling the doc we need to make sure whatever he prescribes is gluten free. He says, "Well, it only has a little gluten in it. It's really just used as a binding agent".  He knew that the figures on celiac disease are 1 in 133 ppl but does NOT know that a little bit of gluten is NOT okay. A little bit of gluten???? And you want me to take 2 pills of a little bit of gluten per day for 7 days. Now, how much is a little bit times 14? :angry:  :angry:  :angry:

 

IMHO we have a big problem with all these specialists. They only know their specialty. Nothing else. Just their specialty. Now, we all know that symptoms of anything can cross specialty lines left & right & then back again. So how in hell are we supposed to get correct dx's when 90% of our symptoms are not THAT docs specialty?????


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#875620 Sorry I Haven't Been Here To Help..

Posted by squirmingitch on 20 June 2013 - 09:23 AM

Glad to have you back here! :)

Will you please tell us your story as not many who are now here know it & we would like to hear the successful outcome to keep us fighting another day when we get tired of fighting.


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#874052 Mrs. Dash Table Blend?

Posted by squirmingitch on 11 June 2013 - 06:42 PM

It's been a while now since I had one of those meltdowns Jyn but I do remember them all too well. I remember having them hit me out of the blue after not having had one for a month & then wham! you're in the store & you just want to slide down to a sitting position & bawl out loud. ((((((JYN))))))))

Your bf sounds like a great guy so keep him around for a while. :D

 

BTW, Herb Ox bouillon is gluten free & says so right on the label. Both the chicken & the beef so now you can have bouillon hon.


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#873934 Mrs. Dash Table Blend?

Posted by squirmingitch on 11 June 2013 - 09:51 AM

I'm sure she was on another thread where we talked about it but it never hurts to repeat & remind. Thanks Karen.

 

Iodine can make the dh flare horribly for most of us so you can try going low iodine & see what happens. The low iodine diet can be found @ http://www.thyca.org/rai.htm#diet

Of course you will have leave out the gluten foods as thyroid cancer patients aren't necessarily celiac.

 

Jyn, my screen name took zero thought. When I was registering for the site & I needed to come up with a screen name, I sat there squirming & itching --- thus squirmingitch. However; it's a name I will be elated to loose one day! Perhaps then I will change it (like Prince did) to "The member formerly known as squirmingitch". :lol:  :lol:  :lol:


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#873871 Mrs. Dash Table Blend?

Posted by squirmingitch on 11 June 2013 - 04:45 AM

Jyn, you need to remember that dh can present at any time for 2 yrs. or more even after going strict gluten-free. This is why dh is so vexing. How does one determine if it was food or simply a spontaneous outbreak? This is why my hubs & I will not eat anything that is produced on shared line, will not eat out, will only eat cert. gluten-free foods. This is how we keep from going crazy trying to figure out where the cc came from OR if it was spontaneous. The mental effects of this can be horrendous.

 

So, in short, in may or may not have been something you ate. And IF it was something you ate; it may have been the day before. It will screw your brain up & that's for sure!


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#873472 Dermatitis Herpetiformis ... My Journey

Posted by squirmingitch on 09 June 2013 - 09:56 AM

:)  :)  :)  :)  :)


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