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Finding A Doctor

FairySprinkle

By FairySprinkle
in Doctors

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FairySprinkle Rookie
FairySprinkle
Posted

Hello, I may not have celiac disease, but I do notice that I may be allergic to gluten. If you look in DH category in the forum or through my profile and check my post, why I believe that gluten is causing my bad acne. I am not so sure about getting a test done because I don't know if anything will come out of the test especially if all I see is bad acne when I eat certain foods or put stuff on my face. I know there's something wrong with certain foods I eat like the cracker that has barley malt and wheat. I am sure soup has gluten, and I have found some give me about 5 huge bad pus-filled acne greeting me in the morning mirror. They are extremelly embarrassing. My hair can be pretty frizzy and sometimes limp-no volume, and so I wonder if I stopped eating them, if my hair might grow more healthier? I have back zits and chest with some clooged pores. I am pretty sure there's something in the food because as I ate crackers the other day and the day before that, I got acne near my ear, and that's not common at all. They are pus-filled.

Do you think I should get a test? Will it show up on a test if I am allergic to them?

I am really new to the topic of gluten and celiac disease, so if anyone has a good book I can read about how to avoid them, I'd like to find out.

Is there a book or booklet of ingredients to watch out for when looking for gluten things that I can carry with me?

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tiredofdoctors Enthusiast
tiredofdoctors
Posted

We carry the Gluten-Free Bible with us when we go shopping. My husband also printed out the Delphi list -- it's REALLY lengthy, though, and we just got it, but we plan on taking it on "long" shopping trips. With regard to the break-outs you're having, a good dermatologist can biopsy them and let you know if it is Dermatitis Herpatiformis -- another gluten intolerance ramification. It sounds, though, like you already know the triggers. I would certainly tell the doctor about those. Good luck with your journey . . . . Lynne

SurreyGirl Rookie
SurreyGirl
Posted
Is there a book or booklet of ingredients to watch out for when looking for gluten things that I can carry with me?

Hi FS, have a look at Loren Cordain's research literature. He has papers on acne as well as other gluten-related issues, papers 2, 11, 26 but others too. He has recently presented his acne findings at the deramtology conference in London.

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FairySprinkle Rookie
FairySprinkle
Posted
  • Author

Hi, thank you for the link.

I will do what I can to test the gluten levels, etc. I am not sure where I would find a good dermatologist who will see acne as DH because they don't look like blisters. However, I am seeing a patter from a picture and someone here who says that she gets DH around her mouth like I do as well I see that it runs under my chin. Normally, I don't get bumps under my chin.

Rusla Enthusiast
Rusla
Posted

Have them do a skin biopsy, I forced them to do one on me. It came back as DH and if you have DH you are Celiac. Not all celiacs get it but only Celiacs get it. Getting the skin biopsy saved me going through a stomach biopsy.

slpinsd Contributor
slpinsd
Posted
Have them do a skin biopsy, I forced them to do one on me. It came back as DH and if you have DH you are Celiac. Not all celiacs get it but only Celiacs get it. Getting the skin biopsy saved me going through a stomach biopsy.

yes, i would look into seeing a good dermatologist.

FairySprinkle Rookie
FairySprinkle
Posted
  • Author

My derm takes 3 months to see. I'll see if I can contact a different dermatologist. How is a biopsy done? Does it hurt? Do you have to have skin bumps present in order to have a biopsy?

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Rusla Enthusiast
Rusla
Posted

It doesn't hurt. They scrape off some of the skin that is dry scaley by the sores. The freaking affliction hurts more than the biopsy. I had to go back on gluten for a week just so I would have an huge outbreak. My dh can show up in a few hours with even a slight glutening.

The dermatologist was not going to do it because it wasn't in the "normal" place. I told him to humor me and do it for my peace of mind. He was surprised because he thought all Celiacs were thin and all DH was elbows and knees.

FairySprinkle Rookie
FairySprinkle
Posted
  • Author

Thanks. I am going to start calling when my insurance kicks in in a few weeks or less.

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  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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