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Questioning My Conclusion
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10 posts in this topic

It's been a long time since I've posted... because both my daughter and I have been doing well. Won't retell our stories....the recap is that alhtough neither of us have a formal diagnosis, the gluten-free diet helped my daughter in many ways, and going gluten-free helped me get rid of a rash with many of the hallmarks of DH.

I had been experiencing a red itchy rash, and when I went gluten-free 8/10/09, the rash began to slowly heal.

Sometimes when you don't have a formal diagnosis, you question yourself.

About a month after going gluten-free, I let myself have pasta at a family gathering, and 48 to 72 hours later, the rash worsened again, giving me incentive to stay away from wheat. I was sucessful at learning and didn't have another temptation til June 2010 - when coworkers surprised me with a cake. (Yes I ate some.)

I went home, waiting for things to start to itch. By this time one leg was completely healed (still had purply scars) and other leg was about 2/3 healed. Nothing happened...so .... two days later I ate more cake. about 48 hours after that, I had more itchiness and a few new spots. so once again, I was back on the wagon.

6 months down the road, the rash is completely gone (still have a few fading purple spots) After having successfully navigated thru Thanksgiving and Christmas, I was tempted by my sisters gingerbread cookies (they are totally awesome.) I ate two this past Tuesday...nothing happened. I ate two more last night... nothing happened.

so after dosing myself and nothing happening, this morning I began thinking

"mayben I'm not intolerant after all." Lunch time came... and I went for a wrap. (First one in over a year.)

About an hour and a half later I felt tremendously lethargic. (I haven't felt that way after eating in a long time!) And and hour after that, I had the dry heaves.

questions to all of you: if you were in my shoes, what would you be thinking about your selfdiagnosis of being gluten intolerant?

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I'd be thinking I was a pretty smart (gluten-free) cookie and I should stick to my diet. ;)

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It's just food. It's not worth letting it control you. Trust yourself and your decision. No more gluten.

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On the other hand, since you seem to tolerate it O.K., maybe it is a good time to eat enough for awhile to get yourself tested. Personally, I wouldn't do that because I just get too sick. My doctors even recommended against it.

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thanks all. as far as continueing to eat gluten in order to pursue testing goes, I'm not really wild about that prospect. Yes it would be nice to have a diagnosis. But back in June, when the rash was reactivated after eating cake, I happened to have a physical. I talked to my physician about what I had experienced over the past year, and she told me she had several patients that were pursuing a gluten free diet for relief of one thing or another. Her main two points were, that I had been off gluten too long for there to be detectable antibodies present, but, if patients experienced a benefit, she supported their gluten free lifestyles.

It was the lack of reaction after two days of indulging (granted we're just talking about a few cookies) that made me question. Before, even tho it was delayed a day or two, such an indulgence resulted in "I can't stop scratching" itchiness, and at least a few more new red blisters.

I do count the crappy way I felt after lunch as some kind of reaction. I didn't feel that way after Thanksgiving or Christmas dinner, and I ate way more on those occasions. (just all gluten free.)

But I am kind of perplexed as to why nothing's happening in the skin. I felt a little itchy last night after walking the dogs, but, that could be attributed to winter dryness and wearing long underwear! and it didn't last, nor did I break out.

if anyone has some thoughts or similar experiences to share, I would really appreciated it. In the meantime, I need to go grocery shopping for our New Year's feast!

Do you suppose its because the antibodies have totally cleared from the skin layers?

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I would guess that your threshold is a bit higher than some. It takes a couple days of eating for your antibody response to build up to the point where you feel the symptoms.

I guess you could approach this two ways; you could think "oh, it'll be fine if I have a bit of gluten once in a while" or you can think "I'm lucky that I

m not as hyper-reactive as some people. I'll stay as gluten free as possible so I don't end up getting sick just walking down the bread aisle".

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I would guess that your threshold is a bit higher than some. It takes a couple days of eating for your antibody response to build up to the point where you feel the symptoms.

I guess you could approach this two ways; you could think "oh, it'll be fine if I have a bit of gluten once in a while" or you can think "I'm lucky that I

m not as hyper-reactive as some people. I'll stay as gluten free as possible so I don't end up getting sick just walking down the bread aisle".

I do believe my threshold is higher. My daughter, for example, is more sensitive than I. Would it make sense, that the longer I've been adopting the gluten free diet (16 months now), that this threshold would be even higher than when I started, because those antibodies have been eliminated over time? That there would be an even longer lag time between ingestion and reaction? (time required for antibodies to build up?)

My perspective is more along the lines of staying gluten free as possible. It is just easier that way. After my birthday I began talking to some of my coworkers, who weren't aware of my "issues". (Never mind that I hadn't worn a skirt to work in over a year because of the rash on my legs!!) Family members in the local vicinity now "get it", even tho it may affect what's on the table at a holiday dinner...

My sister lives quite a distance away and our last Christmas together was before I started eliminating gluten. We've talked about it, as she was aware of my daughters problems. (Who had more issues than I did - mine were chiefly the rash). She was like, "oh one cookie won't hurt you..." Her visit was very short and I didn't want to make an issue.... This is something I am learning to deal with but I am not perfect at it yet.

Well, her cookies are gone, the only ones left are the gluten free ones I made. They're not quite as good as my sisters - its a work in progress!

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Here's what I've found out:

1) It can take up to ten years for the antibodies to completely leave your skin. Some people are more fortunate and find relief in 6 months, a year, or two years. I have a friend with DH who still flares after being gluten free for 5 years.

2) When you ingest gluten you are taking the risk that new antibodies are being deposited just waiting to be activated by ingestion of additional gluten, iodine and the like.

When I get tempted to cheat I just think about all those nasty little things waiting to make me miserable at the most inconvenient time. I have been so embarrassed about this rash (have not worn short sleeves or skirts for at least 7 years) that no cookie or cake or pie (my favorite) is worth it. I can't wait for this to clear up, but I have had to accept that it will take patience and a lifelong commitment to remaining gluten free. It is funny that people don't understand and they think that just a little won't hurt. Or that they can "kill" the gluten by heating up the pan (or whatever). I ask them if they would be willing to eat food cooked in a pan that had previously contained arsenic and they tend to get it with that analogy.

My sense is that your self diagnosis is correct. After all, we know our bodies better than anyone else.

Best wishes and Happy New Year!

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I had a large rash on my leg for over a year. It eventually went away. 5 years later I got sores on my face. Small spots that got larger and more reactive. Believe the leg rash. Because dermatologists don't recognize it on the face. 7 years and dozens of scars later after antibiotics and fungal treatments and eventually being told it was neurotic excoriation, I found out about DH. This rash has come and gone many times in my life but no one ever said Celiac or DH. I found this site and got relief from gluten free eating. No biopsy or test but sores are healing. I have often wondered why that leg rash went away and never came back. I also wish I had learned about it before it hit my face. At any rate, I wouldn't risk cheating even if the antibodies have lessened to the degree that you seem to be able to handle wheat for the simple reason that the research shows that people with DH are more susceptible to the lymphomas and intestinal cancers of Celiac disease than those with gastrointestinal problems. That keeps me on the straight and narrow. Also remember this is called the Moving Target Disease. Your skin sores might heal then another symptom comes, like the fatigue you had after the pasta. Only if you haven't had the symptoms, you might forget to attribute them to Celiac and you run the risk of getting diagnosed with a bunch of things. I was given Dilaudid for migraines, Xanax for anxiety, Zoloft for depression, Flexaril for muscle aches and pains, and predisone for the skin sores that would not heal. What a nightmare. If I had found Celiac when I had that first leg rash, I would have had a diagnosis, with or without Dr. approval.

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If you end up reactivating the rash you could go to the derm to biopsy it to see if it is in fact DH. Not sure on the exact procedure though. Others on here would be more helpful. It really sounds like you were/are doing well gluten free.

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    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
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