Positive DH Biopsy-Desperate New Mother

[RebeccaLMoyer]

@RBnorth66  @trents  @knitty kitty @Viv1990  

Q: Do skin biopsy results for DH that read "strong indication of DH" considered positive or not?

Reasons: I took skin biopsy result to my Integrative MD today, who said it was "not definitely positive for DH" because results read: "strong indication of dermatitis herpetiformis". 

Prior to this, the dermatologist said it is positive and sent me to gastroenterology for check. Gastroenterology did endoscopy w/ biopsy (even though I've been on gluten-free for ten years) and endoscopy came back clear (not surprising). Gastro says this means "Celiac Disease is not current active in small intestine " but refers me back to the dermatologist about the DH... and derma said she "doesn't know, try another gastroenterologist". Now the Integrative MD says it's "not positive" and I am SO CONFUSED. I really need to know whether this is gluten-related or not, because of the other disabling symptoms. 

PS: I tried to upload photos of rash for input, but files would not attach due to size. Currently I have blistering rash on/near my fingers on both hands and itchy petechiae on both right and left sides of upper & lower arms, elbows, knees, and a few on my nose. Still getting new spots/ breakouts of petechiae almost every day. 

 

[RebeccaLMoyer]

On 8/6/2021 at 9:25 PM, knitty kitty said:

@Knittykitty --What is the treatment for thiamine deficiency? If oral supplement, what kind?

Reason: I checked my multivitamin & prenatal and B-complex and have already been taking 8,000+% of thiamine (and other Bs) for years. The form in my B-complex is "thiamine HCI". 

 

[knitty kitty]

11 hours ago, RebeccaLMoyer said:

 

I take Allithiamine and Benfotiamine.  I get mine on line.  Allithiamine has been shown to cross the blood brain barrier easily.  Benfotiamine has been shown to help with the intestinal damage and diabetes.  

A positive for DH is a positive for Celiac Disease.  

 

[trents]

5 minutes ago, knitty kitty said:

I take Allithiamine and Benfotiamine.  I get mine on line.  Allithiamine has been shown to cross the blood brain barrier easily.  Benfotiamine has been shown to help with the intestinal damage and diabetes.  

A positive for DH is a positive for Celiac Disease.  

 

I don't know about Allithiamine but Benfotiamine is not water soluble. What is a safe dosage?

[knitty kitty]

11 minutes ago, trents said:

I don't know about Allithiamine but Benfotiamine is not water soluble. What is a safe dosage?

Allithiamine and Benfotiamine are both fat soluble.  Being fat soluble allows them to get into the cells easily.  

Thiamine is cleared from the body in about two and a half to three hours.  Excess or unused thiamine is cleared and excreted in urine. Spread thiamine supplementation throughout the day, with meals.  

There's no upper safety limit to thiamine.  High dose thiamine is 500mg or more a day.  Some research suggests 1000mg  to 1500 mg are more beneficial.  Spread thiamine supplementation throughout the day.  

https://ods.od.nih.gov/factsheets/Thiamin-HealthProfessional/

Edited August 12, 2021 by knitty kitty
Add link and information

[trents]

I was thinking fat soluble vitamins carried the risk of toxicity with excessive dosages, for instance, D3. Water soluble vitamins are certainly cleared from the system via the kidneys and urine but my understanding is that is not true with fast soluble vitamins.

Edited August 12, 2021 by trents

[knitty kitty]

The fat based vitamins are Vitamins A, D, E and K.  

Allithiamine and Benfotiamine are fat-soluble.  They mix in with fats like the lipids that make up the cell membrane and can easily pass through.

 

The fat based vitamins can be dangerous because they can be stored in the body for long periods of time and take a long time to clear.  But high doses are usually attributed to oversupplementation or over consumption of polar bear liver as with Vitamin A.  

https://ods.od.nih.gov/factsheets/VitaminA-HealthProfessional/

 

 

[trents]

Ah! So there's a difference between fat based vitamins and fat soluble vitamins. I didn't know that!

[RebeccaLMoyer]

@trents @knitty kitty Thanks for this, and the formulations are helpful. The issue with high-dose Bs and nursing is while it is technically "safe" because they don't build up in fat, the mega Bcomplex turns my milk yellow and make Vivi fussy and unable to rest. So that might have to wait until after nursing, but I will double check on those formulations.

[RMJ]

54 minutes ago, RebeccaLMoyer said:

@trents @knitty kitty Thanks for this, and the formulations are helpful. The issue with high-dose Bs and nursing is while it is technically "safe" because they don't build up in fat, the mega Bcomplex turns my milk yellow and make Vivi fussy and unable to rest. So that might have to wait until after nursing, but I will double check on those formulations.

That yellow would be from the riboflavin (B2)

[Wheatwacked]

Quote

For potassium, the AI number for females over the age of 14 is 4,700 milligrams a day. While the number does not change for pregnant women, the number changes to 5,100 milligrams a day for women who are nursing.  https://healthyeating.sfgate.com/much-potassium-female-need-5059.html

I also have labile BP. 152/92 and twenty minutes later 84/62. When I was potassium difficient it was always high. I started prednisone at 30 mg since 2012 and between starting GFD and raising my nutrition levels through food choice and supplements I am comfortable at 5 mg and the BP swing is not as large. Never had DH, but at one point I spent 22 hours a day in bed. I agree with Vivi, if the B vitamins are changing your milk and she does'nt like it, B vitamins are not your deficiency. Zinc, potassium, vitamin K, choline, vitamin E, calcium, Pantothenic acid (B5 is not usually in the b-complexes), Folate, vitamin A, vitamin C, magnesium are the ones I am most often deficient in. I found that if I get 5 grams or more of potassium from 2000 calories of food that most almost all the others are also above the RDA.+

I've been on 10,000 Iu/day (250 mcg) since 2015. Prednisone interferes with it's assimilation. I wonder if this is the reason 50% of people on pred get osteoporosis. 

Quote

2013–2016 NHANES data showed that 92% of men, more than 97% of women, and 94% of people aged 1 year and older ingested less than the EAR of 10 mcg (400 IU) of vitamin D from food and beverages.   https://ods.od.nih.gov/factsheets/VitaminD-HealthProfessional/

Quote

Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective (mayoclinicproceedings.org)

Ekwaru et al recently reported on more than 17,000 healthy adult volunteers participating in a preventative health program and taking varying doses of vitamin D up to 20,000 IU/d. These patients did not demonstrate any toxicity, and the blood level of 25(OH)D in those taking even 20,000 IU/d was less than 100 ng/mL.    https://www.mayoclinicproceedings.org/article/S0025-6196(15)00244-X/pdf

 

[AlwaysLearning]

I don't get DH but my sister does and she goes a little crazy trying to figure out what foods might be triggers. She basically gave herself an eating disorder because she became so afraid to eat, so I understand that it can be extremely frustrating. My heart goes out to you.

I would not overlook the possibility that you may have been exposed to gluten through plastic. Some plastics are made using gluten because it makes the plastic more flexible. Having been in the hospital, is seems that it would be practically impossible to avoid the potential for problems in that arena. In know that gluten isn't supposed to be able to affect us through our skin, but I once had a pair of reading glasses that glutened me. It is hard to believe until it happens to you.

I also can't help but wonder if there is some product that has been introduced into your life, as you add all of the components that come with a baby that might contain gluten. Baby powder? Lotion? So many possibilities. 

Something knitty kitty said made me think histamines might also be a problem. If DH is affected by iodine, that most likely means there is a thyroid component to it. Iodine is one of the fuels your thyroid needs to produce the hormones that affect every process in your body. When your thyroid runs too fast, you will overproduce histamines and if you cross over the threshold of having too many histamines in your body, you'll end up with all sorts of crazy symptoms including itchy skin. If you think histamines might be a problem for you, then getting your hormone levels checked to see if you might have a thyroid problem is one approach, lowering histamines in your diet is another. If you do have hyperthyroidism, I recommend going a step further and figuring out why. The thyroid is part of your immune system so constant exposure to things like mold can cause it to become overactive, though having been pregnant, you might have to wait a while to get back to your version of normal before any conclusions can be drawn.

[RBnorth66]

23 hours ago, RebeccaLMoyer said:

@RBnorth66  @trents  @knitty kitty @Viv1990  

Q: Do skin biopsy results for DH that read "strong indication of DH" considered positive or not?

Reasons: I took skin biopsy result to my Integrative MD today, who said it was "not definitely positive for DH" because results read: "strong indication of dermatitis herpetiformis". 

Prior to this, the dermatologist said it is positive and sent me to gastroenterology for check. Gastroenterology did endoscopy w/ biopsy (even though I've been on gluten-free for ten years) and endoscopy came back clear (not surprising). Gastro says this means "Celiac Disease is not current active in small intestine " but refers me back to the dermatologist about the DH... and derma said she "doesn't know, try another gastroenterologist". Now the Integrative MD says it's "not positive" and I am SO CONFUSED. I really need to know whether this is gluten-related or not, because of the other disabling symptoms. 

PS: I tried to upload photos of rash for input, but files would not attach due to size. Currently I have blistering rash on/near my fingers on both hands and itchy petechiae on both right and left sides of upper & lower arms, elbows, knees, and a few on my nose. Still getting new spots/ breakouts of petechiae almost every day. 

 

My skin biopsy results say it's "positive" for DH.  It also has much more detail in the results.  It was a Direct Immunofluoresence  Test from the University of Utah.   I had a blood test for Celiac, which was positive.  Also, I have my DNA results which shows I have the genes for Celiac.  When I received my DNA results (prior to DH diagnosis) it said I was at a "slightly increased risk" for Celiac Disease.  Two years later I started having my DH symptoms.     With those 3 confirmations, my doctor said I did not need to have an endoscopy.  

I understand your frustration.  It took my dermatologist three months to figure out I had DH and he really didn't figure it out.   After 3 months of itching and breaking out, I realized that after I had eaten 2 slices of wheat bread and licorice one day, that my itching increased 10 fold.  I realized that it could be gluten and saw my derma doc several days later.  That's when he took the biopsy.  

I am fortunate in that my primary care doctor is really good and a smart guy.  When I got my results from the biopsy, I immediately called my primary care doc and saw him two days later.  He did the blood test and he has been the one treating me every since.  

If you are anywhere close to the Mayo Clinic, I think I would check into going there.  You need a complete workup.

 

 

 

 

[janet.brunson]

I have DH, which was actually how I found out I had celiac.  After months of itching and burning rash (and lots of creams), I went to a dermatologist who thought maybe it was DH, and actually went back to her medical book to look at it!  Biopsy did confirm.  She was the one that then sent me to gastro, as those Celiac and DH tend to run together.  You are right, your scope would be negative as you have been gluten-free for a long time.  Those trace amounts of gluten can still cause the break out though.  Dapsone is usually the prescription that helps these breakouts - I don't take it all the time because of potential side effects (my choice) but it definitely works quickly in a break out situation.  

[Scott Adams]

Welcome to the forum @janet.brunson. You are right, Dapsone can have some very serious side effects, so if you can avoid using it by keeping your diet 100% gluten-free, it's a better option.

Another thing to consider, which is mentioned earlier in this thread, is that foods that are high in iodine can also trigger DH flareups, so many with it also avoid certain sea foods, sea weed, etc.