Gluten Free 2.5 years and now I have dermatitis herpetiformis. Also, low ferritin level.

[JD-New to Celiac]

I have watched (very slowly) the Tissue Transglutaminase IgA levels go down over two and half years and late last year I was finally at a normal level. Then two months ago I started getting a painful and itchy rash on my elbows. Dermatologist just diagnosed it as dermatitis herpetiformis. Is it possible to get brand new symptoms even though I am fairly confident I have had not consumed gluten. And why a DH?  I never had that in the past. Has anyone gotten DH long after being diagnosed with Celiac.

Also, what other option is there for someone with a normal iron level but low ferritin level (my ferritin is 28 - range is 38-380). I take an iron pill every day but still have chills, fatigue, dizzy, shortness of breath. I am always so exhausted.

[Wheatwacked]

Hi JD welcome to the forum.

Tough question. First congrats on staying gluten free.

Any new soaps etc that might have gluten in them? Any medications?

High vitamin D blood levels is protective. Low D is common because we are told to avoid sun.

The short answer is vitamin deficiencies. On a gluten diet, wheat flour is fortified with minerals and vitamins to replace what is lost in the milling process. It is not required in gluten free processed food, so a Celiac eating a gluten free processed food diet will not get enough. 

The main difference is that iron is a mineral (present in red blood cells that carries oxygen) whereas ferritin is a protein that stores iron and releases it when the body needs it. 

• vitamin A supplementation alone may reduce the risk of anemia, by improving hemoglobin and ferritin levels in individuals with low serum retinol levels. Lots of carrots, Cod Liver Oil, Tart Cherry Juice, Red leaf lettuce. Betacarotine supplements is advised against. 
• B12, Folate, Choline, B1 Thiamine, B5

  11 hours ago, JD-New to Celiac said:

  chills, fatigue, dizzy, shortness of breath. I am always so exhausted.

   Until last year I would turn on the heat below 78 degrees. Heres what works for me for energy and belly fat:
• 500 mg Thiamine
• 500 mg Pantothenic Acid
• 840 mg phosphatidyl choline
• 1000 mcg B12

Quote

Use of beta-carotene has been associated with an increased risk of lung cancer in people who smoke or who have been exposed to asbestos. One study of 29,000 male smokers found an 18% increase in lung cancer in the group receiving 20 mg of beta-carotene a day for 5 to 8 years.  https://www.mayoclinic.org/drugs-supplements/beta-carotene-oral-route/precautions/drg-20066795#:~:text=Use of beta-carotene has,for 5 to 8 years.

Edited March 24, 2023 by Wheatwacked

[Scott Adams]

I would also like to mention that it is well known that iodine might trigger the DH rash in some people with DH. Iodine can be found in iodized salt, sea foods, seaweed, and dairy.

[captaincrab55]

Hi JD,  I have DH and just skin contact with gluten can cause a DH rash on my body.   Not everyone is that sensitive.   

 

[Renee E.]

I had a similar experience after 4 years gluten free. My first DM break out. It’s extremely unpleasant and I’m still trying to learn to deal with it. Came here for advice.

[shadycharacter]

On 3/24/2023 at 3:35 AM, JD-New to Celiac said:

I have watched (very slowly) the Tissue Transglutaminase IgA levels go down over two and half years and late last year I was finally at a normal level. Then two months ago I started getting a painful and itchy rash on my elbows. Dermatologist just diagnosed it as dermatitis herpetiformis. Is it possible to get brand new symptoms even though I am fairly confident I have had not consumed gluten. And why a DH?  I never had that in the past. Has anyone gotten DH long after being diagnosed with Celiac.

Also, what other option is there for someone with a normal iron level but low ferritin level (my ferritin is 28 - range is 38-380). I take an iron pill every day but still have chills, fatigue, dizzy, shortness of breath. I am always so exhausted.

Have you checked your hair and skin products for hydrolyzed wheat protein? It's a common ingredient and unless fully hydrolyzed may contain gluten and wheat allergens. 

Apparently the ttgIgA antibody causing DH is  different from the one causing GI problems. The one causing flattened villi is "type 2" and the one causing DH is "type 3". I think normal ttgIgA blood samples only detect type 2. Was your DH diagnosed with a skin biopsy? 

Maybe it's because of increases sensitivity when people develop DH  some time after going gluten free? If so I suppose the solution is to be more strict, or, as mentioned by Scott Adams, look out for sources of excess iodine. 

[trents]

On 3/23/2023 at 7:35 PM, JD-New to Celiac said:

I have watched (very slowly) the Tissue Transglutaminase IgA levels go down over two and half years and late last year I was finally at a normal level. Then two months ago I started getting a painful and itchy rash on my elbows. Dermatologist just diagnosed it as dermatitis herpetiformis. Is it possible to get brand new symptoms even though I am fairly confident I have had not consumed gluten. And why a DH?  I never had that in the past. Has anyone gotten DH long after being diagnosed with Celiac.

Also, what other option is there for someone with a normal iron level but low ferritin level (my ferritin is 28 - range is 38-380). I take an iron pill every day but still have chills, fatigue, dizzy, shortness of breath. I am always so exhausted.

My understanding is that ferritin level represents long term iron storage whereas hemoglobin measures the immediate availability of iron circulating in the blood. It's like calcium. The body will take calcium from your bones if serum calcium is low. So, could it be that your body is not adding iron to the storage and it is being depleted in order to keep serum levels up to snuff? Have you looked into pernicious anemia, a kind of anemia caused by loss of ability to assimilate B12, a vitamin necessary for the assimilation of iron?