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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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    • knitty kitty
      My only proof

      By knitty kitty · Posted

      Hello, @NanceK, I'm glad you're willing to give Benfotiamine with B Complex another go!  I'm certain you'll feel much better.   Yes, supplementation is a good idea even if you're healing and gluten free.  The gluten free diet can be low in B vitamins and other nutrients. A nutritionist can help guide you to a nutrient dense diet, but food sensitivities and food preferences can limit choices.  I can't consume fish and shellfish due to the sulfa hypersensitivity and iodine content, and dairy is out as well.  I react to casein, the protein in dairy, as well as the iodine in dairy.  My Dermatitis Herpetiformis is aggravated by iodine.   Blood tests for B vitamin levels are notoriously inaccurate.  You can have deficiency symptoms before blood levels change to show a deficiency.  I had subclinical vitamin deficiencies for years which affected my health, leading to a slow downward spiral.  Because the B vitamins are water soluble, they are easily excreted in urine if not needed.  It's better to have it and not need it than need it and not have it.   Wheat and other gluten containing grain products have vitamins and minerals added to them to replace those nutrients lost in processing.  Manufacturers add cheap vitamins that our bodies don't absorb or utilize well.  Even normal people can suffer from vitamin deficiencies.  The rise in obesity can be caused by High Calorie Malnutrition, where people eat more carbohydrate calories but don't get sufficient thiamine and B vitamins to turn the calories into energy.  The calories are stored as fat in an effort to ration out diminishing thiamine  stores.    It's time to buy your own vitamins in forms like Benfotiamine that our bodies can use well.   Not sleeping well and fatigue are symptoms of Thiamine deficiency.   I'm certain Benfotiamine with a B Complex will help you immensely.  Just don't take them at night since B vitamins provide lots of energy, you can become too energetic to sleep.  Better to take them earlier in your day.   Do keep me posted on your progress!
    • NanceK
      My only proof

      By NanceK · Posted

      Oh wow! Thanks for this information! I’m going to try the Benfotiamine again and will also add a B-complex to my supplements. Presently, I just take sublingual B12 (methylcobalomin). Is supplementation for celiacs always necessary even though you remain gluten-free and you’re healing as shown on endoscopy? I also take D3, mag glycinate, and try to get calcium through diet. I am trying to bump up my energy level because I don’t sleep very well and feel fatigued quite often. I’m now hopeful that adding the Benfotiamine and B-complex will help. I really appreciate your explanation and advice! Thanks again Knitty Kitty!
    • knitty kitty
      Is this celiac?

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    • Trish G
      Fiber Supplement

      By Trish G · Posted

      Thanks, that's a great addition that I hadn't thought of. 
    • trents
      Is this celiac?

      By trents · Posted

      Other diseases, medical conditions, medications and even (for some people) some non-gluten foods can cause villous atrophy. There is also something called refractory celiac disease but it is pretty uncommon.
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