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Symptoms Of Gluten Sensitivity?

juliaanne

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juliaanne Newbie
juliaanne
Posted

Hi Everyone.

I am looking for some feedback. Periodically I get an itchy, blistery rash that I usually just live through. This summer, though, it was really bad and I went to my gp. She got out her dermo book and tried to help me, but really had no idea except to say that it kind of looked like DH. She referred me to a dermatologist, but that took 2 weeks as he is usually booked.

In the meantime, I talked to a friend of mine with celiac and went gluten free. After about 4 days I felt wonderful. I didn't need a nap in the afternoon. (I'm 40 and have had a nap or needed one desperately for my whole life.) I had one or two bowel movements each day--also unheard of for me. I usually was able to convince my body to go once or twice a week often after having to use a laxative or drinking Get Regular tea. My blisters cleared up, though there was still a purplish spot where they had been.

My dermatologist thought it was DH but wanted to rule out lupus and to look at my blood count. All gluten tests were fine as was the lupus test, but my complete blood count as well as my white blood count were both low enough that he wants me to see a hematologist. My gp refuses to give me a referral without doing all the tests again, and I haven't heard back from him yet about making the referral himself.

Anyway, as this relates to this board: I still felt so much better without gluten that I continued to remain gluten free. I assumed that maybe I had a sensitivity but not a strong one (officially), but for me the change was significant. My husband wanted to eat at a restaurant two nights ago, and I chose a meal with some meat that I now realize was grilled on the same grill as tortillas. A couple of hours later, I was itching like a madwoman and went to bed early. Yesterday, the yuck continued and I napped in the afternoon HARD, then found myself still fatigued and with a headache all night. I got up around 1 and then around 7 this morning to take something for the pain. My husband commented that my skin felt hot. This was common when I was on gluten. I would not have a fever or sweats, but my skin would get very hot to the touch at night.

So, I know that's a lot of info. I guess I'm wondering if I could have had negative results after only 2 weeks of being gluten free? My dermatologist said it would have taken 6 months for me to clear up enough not to show up on the blood test. I am also wondering if any of you have similar symptoms to mine??? Part of me is very worried about this low blood count my docs are in a pi**ing contest about now, and ironically I think I'd feel better if I could relate my life long anemia to gluten.

Thanks for any feedback.

Julianne

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juliaanne Newbie
juliaanne
Posted
  • Author
Hi Everyone.

I am looking for some feedback. Periodically I get an itchy, blistery rash that I usually just live through. This summer, though, it was really bad and I went to my gp. She got out her dermo book and tried to help me, but really had no idea except to say that it kind of looked like DH. She referred me to a dermatologist, but that took 2 weeks as he is usually booked.

In the meantime, I talked to a friend of mine with celiac and went gluten free. After about 4 days I felt wonderful. I didn't need a nap in the afternoon. (I'm 40 and have had a nap or needed one desperately for my whole life.) I had one or two bowel movements each day--also unheard of for me. I usually was able to convince my body to go once or twice a week often after having to use a laxative or drinking Get Regular tea. My blisters cleared up, though there was still a purplish spot where they had been.

My dermatologist thought it was DH but wanted to rule out lupus and to look at my blood count. All gluten tests were fine as was the lupus test, but my complete blood count as well as my white blood count were both low enough that he wants me to see a hematologist. My gp refuses to give me a referral without doing all the tests again, and I haven't heard back from him yet about making the referral himself.

Anyway, as this relates to this board: I still felt so much better without gluten that I continued to remain gluten free. I assumed that maybe I had a sensitivity but not a strong one (officially), but for me the change was significant. My husband wanted to eat at a restaurant two nights ago, and I chose a meal with some meat that I now realize was grilled on the same grill as tortillas. A couple of hours later, I was itching like a madwoman and went to bed early. Yesterday, the yuck continued and I napped in the afternoon HARD, then found myself still fatigued and with a headache all night. I got up around 1 and then around 7 this morning to take something for the pain. My husband commented that my skin felt hot. This was common when I was on gluten. I would not have a fever or sweats, but my skin would get very hot to the touch at night.

So, I know that's a lot of info. I guess I'm wondering if I could have had negative results after only 2 weeks of being gluten free? My dermatologist said it would have taken 6 months for me to clear up enough not to show up on the blood test. I am also wondering if any of you have similar symptoms to mine??? Part of me is very worried about this low blood count my docs are in a pi**ing contest about now, and ironically I think I'd feel better if I could relate my life long anemia to gluten.

Thanks for any feedback.

Julianne

The Fluffy Assassin Enthusiast
The Fluffy Assassin
Posted
Hi Everyone.

I am looking for some feedback. Periodically I get an itchy, blistery rash that I usually just live through. This summer, though, it was really bad and I went to my gp. She got out her dermo book and tried to help me, but really had no idea except to say that it kind of looked like DH. She referred me to a dermatologist, but that took 2 weeks as he is usually booked.

In the meantime, I talked to a friend of mine with celiac and went gluten free. After about 4 days I felt wonderful. I didn't need a nap in the afternoon. (I'm 40 and have had a nap or needed one desperately for my whole life.) I had one or two bowel movements each day--also unheard of for me. I usually was able to convince my body to go once or twice a week often after having to use a laxative or drinking Get Regular tea. My blisters cleared up, though there was still a purplish spot where they had been.

My dermatologist thought it was DH but wanted to rule out lupus and to look at my blood count. All gluten tests were fine as was the lupus test, but my complete blood count as well as my white blood count were both low enough that he wants me to see a hematologist. My gp refuses to give me a referral without doing all the tests again, and I haven't heard back from him yet about making the referral himself.

Anyway, as this relates to this board: I still felt so much better without gluten that I continued to remain gluten free. I assumed that maybe I had a sensitivity but not a strong one (officially), but for me the change was significant. My husband wanted to eat at a restaurant two nights ago, and I chose a meal with some meat that I now realize was grilled on the same grill as tortillas. A couple of hours later, I was itching like a madwoman and went to bed early. Yesterday, the yuck continued and I napped in the afternoon HARD, then found myself still fatigued and with a headache all night. I got up around 1 and then around 7 this morning to take something for the pain. My husband commented that my skin felt hot. This was common when I was on gluten. I would not have a fever or sweats, but my skin would get very hot to the touch at night.

So, I know that's a lot of info. I guess I'm wondering if I could have had negative results after only 2 weeks of being gluten free? My dermatologist said it would have taken 6 months for me to clear up enough not to show up on the blood test. I am also wondering if any of you have similar symptoms to mine??? Part of me is very worried about this low blood count my docs are in a pi**ing contest about now, and ironically I think I'd feel better if I could relate my life long anemia to gluten.

Thanks for any feedback.

Julianne

Let's see. I think I can simplify this fast. Dermatitis herpetiformis (dh) is frequently associated with celiac disease, but whether or not you're celiac, if you have dh you have to go on the gluten-free diet: Open Original Shared Link Dh is diagnosed by biopsy which can only be done during an outbreak. Since your dermatologist seems to be the doctor who's willing to work with you, you should see if he'd be willing to see you immediately whenever you have your next outbreak, then eat gluten until you have one. This won't necessarily diagnose you with celiac disease, but since the diet is the same, it makes no difference operationally.

Here are pictures of dh; see if they look familiar: Open Original Shared Link

leadmeastray88 Contributor
leadmeastray88
Posted
This won't necessarily diagnose you with celiac disease, but since the diet is the same, it makes no difference operationally.

This is incorrect - if you are diagnosed with DH, then you are also diagnosed with Celiac Disease. DH is the skin manifestation of Celiac Disease, that's why the "treatment" is the same: the life-long gluten free diet.

With the removal of gluten, the DH should clear up as well as any digestive issues you have.

Here is a link to more info on DH:

https://www.celiac.com/categories/Dermatiti...Celiac-Disease/

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