Positive DH Biopsy-Desperate New Mother

[RebeccaLMoyer]

I am a severely sensitive Celiac/DH and brand new mother who is desperate because my illness is making me unable to care for my 8-week old daughter in the way I want to. 

Since her birth I am breaking out in new DH spots every day, sometimes multiple times a day. 

Biopsy came back positive for gluten antibodies ****In spite of ten years of ultra-strict diet& lifestyle ***** (please see below for details). 

I am even breaking out on the Autoimmune Protocol (AIP) diet with 100% adherence. My dermatologist tries, but is not helpful. So...please help, community!

Specifically, I need to know:

1. Did pregnancy change the expression of DH for any other mamas?

2.How long after gluten exposure you break out in new DH?  (To figure out a source)

3. How long can a single exposure trigger a reaction for? (Could accidental CC exposure mid-pregnancy could still be causing it 6 mths later)

4. Any recommendations for dermatologist consults that DO know about DH and practice in Ohio or virtual medicine.

THANK YOU!!!!!! Rebecca 

 

***** I was diagnosed in 2011 and must stress that I am fully educated and compliant with all gluten-free protocols and more. (I eat nothing not made in my own 100% gluten-free kitchen, and have already scoured my life for possible sources. Even the dogfood  & diaper wipes are gluten-free! I brought my own whole food to the hospital for labor.)  The AIP diet is ridiculously strict.

In addition to DH I am dealing with disabling fatigue, neurological, and psychological, and emotional symptoms [not just postpartum,  the brain fog & brain on fire we all know.too well]. I have full body intermittent tremors, labile blood pressure (from 100/70 to 155/110 unmedicated),and can't do gentle yoga or walking without days of recovery time.

[trents]

Welcome to the forum, Rebecca.

What vitamins and supplements are you taking to address the likely deficiencies such a limited diet will cause?

[RebeccaLMoyer]

1 hour ago, trents said:

Welcome to the forum, Rebecca.

What vitamins and supplements are you taking to address the likely deficiencies such a limited diet will cause?

Thank you @Trents! I am taking what is allowed for nursing (below) & have monthly monitoring for bloodwork---all vitamin levels and CBC "normal"🙃-- by maternal fetal medicine docs and an integrative MD. 

LIST: Prenatal w/iron + more iron (prescribed for anemia), DHA + EPA in, B-complex with 5MTHR (for general mutation), D & sun exposure for D, full spectrum probiotic. Extra Magnesium & C as needed. Related prescriptions include: 20mg daily Predinisone (on 1yr+) & steroid cream (new, works for DH symptoms)

PS: I am married to a Trent

[trents]

Have you checked to see if all your meds and supplements are gluten free?

[RebeccaLMoyer]

4 hours ago, trents said:

Have you checked to see if all your meds and supplements are gluten free?

Yes, and I called the manufacturers to verify.

[icelandgirl]

Hi Rebecca,

I don't have DH and am not able to help out in that regard, but I wanted to send you huge (((hugs))) and best wishes for some answers soon so that you can take care of and enjoy your sweet baby!

I do believe that my celiac was triggered by my pregnancy and birth of my youngest.  I was continually sick for the first 2 and a half years of her life and it was so frustrating.

 

[cristiana]

Hi Rebecca

Similarly, I don't have DH but I do now have adult onset eczema so I know how difficult living with extremely irritated skin can be.  I know that there are a few DH sufferers who contribute to this forum and I hope someone will be in touch soon.

Just a suggestion - I could be entirely wrong so I'm hoping others will tell me off straight away if I am! - but I get relief from Epsom Salts baths and I noticed when I searched in this forum DH sufferers have said this helped them in the past, so you might want to give this a try. 

Meanwhile, I echo my friend icelandgirl's words - I really hope you can find some answers soon.

Cristiana

 

 

[knitty kitty]

@RebeccaLMoyer and all,

DH outbreaks can occur or worsen when we are exposed to iodine either in foods or medications.  Medications containing iodine I've reacted to include contrast dye for x rays and betadine.  Medications containing sulfites exacerbated my DH.  High iodine foods include seafood like fish and shellfish (crustaceans), seaweed (nori), and dairy products including milk, yogurt, and cheeses.  I switched from iodized salt to pink Himalayan salt.  

Yes, accidental exposure mid-pregnancy could still be causing it 6 months later.  

The cells that produce gluten antibodies live for eighteen months to two years.  So six months later, yes, they can still be making antibodies which contribute to DH.  

Yes, the AIP diet is ridiculously strict.  I've done it myself.  The AIP diet or any gluten free diet can be deficient in vitamins and minerals over the long term.  Checking for nutritional deficiencies is part of proper follow up care for Celiacs, however, blood tests for vitamin deficiencies are not accurate.  Vitamins are used inside the cells of tissues.  Blood levels don't accurately reflect the amount of vitamins inside the cells.  A certain level of vitamins are kept in the blood to feed the brain.  There can be "normal" levels in the blood, but the tissues will be starving.  

Niacin (Vitamin B3) helps our skin heal those DH spots.

Thiamine (Vitamin B1) will help with the other symptoms....

"disabling fatigue, neurological, and psychological, and emotional symptoms, full body intermittent tremors, labile blood pressure"

....these are classic symptoms of low thiamine.  (The erythrocyte transketolase test is a more accurate test for thiamine deficiency than a blood test.)

Infants in utero and while breastfeeding will leech nutrients from the mother leaving her deficient in vitamins and minerals.  

"Thiamine deficiency, beriberi, and maternal and child health: why pharmacokinetics matter"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4510948/

Discuss with your doctor the high dose Thiamine treatment and taking a B Complex twice a day.  The eight B vitamins are water soluble and nontoxic.  We pee out any excess.  

Hope this helps!

 

 

[cristiana]

Thanks for this Knitty Kitty - I knew I'd seen someone write about iodine on the forum recently and couldn't think who it was - thanks for you expertise.  I really hope this helps, Rebecca.

[RebeccaLMoyer]

20 hours ago, knitty kitty said:

@RebeccaLMoyer and all,

DH outbreaks can occur or worsen when we are exposed to iodine either in foods or medications.  Medications containing iodine I've reacted to include contrast dye for x rays and betadine.  Medications containing sulfites exacerbated my DH.  High iodine foods include seafood like fish and shellfish (crustaceans), seaweed (nori), and dairy products including milk, yogurt, and cheeses.  I switched from iodized salt to pink Himalayan salt.  

Yes, accidental exposure mid-pregnancy could still be causing it 6 months later.  

The cells that produce gluten antibodies live for eighteen months to two years.  So six months later, yes, they can still be making antibodies which contribute to DH.  

Yes, the AIP diet is ridiculously strict.  I've done it myself.  The AIP diet or any gluten free diet can be deficient in vitamins and minerals over the long term.  Checking for nutritional deficiencies is part of proper follow up care for Celiacs, however, blood tests for vitamin deficiencies are not accurate.  Vitamins are used inside the cells of tissues.  Blood levels don't accurately reflect the amount of vitamins inside the cells.  A certain level of vitamins are kept in the blood to feed the brain.  There can be "normal" levels in the blood, but the tissues will be starving.  

Niacin (Vitamin B3) helps our skin heal those DH spots.

Thiamine (Vitamin B1) will help with the other symptoms....

"disabling fatigue, neurological, and psychological, and emotional symptoms, full body intermittent tremors, labile blood pressure"

....these are classic symptoms of low thiamine.  (The erythrocyte transketolase test is a more accurate test for thiamine deficiency than a blood test.)

Infants in utero and while breastfeeding will leech nutrients from the mother leaving her deficient in vitamins and minerals.  

"Thiamine deficiency, beriberi, and maternal and child health: why pharmacokinetics matter"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4510948/

Discuss with your doctor the high dose Thiamine treatment and taking a B Complex twice a day.  The eight B vitamins are water soluble and nontoxic.  We pee out any excess.  

Hope this helps!

 

 

Oh my goodness, THANK YOU!!!! Type of info I haven't been able to find. So appreciated!!!!

[RebeccaLMoyer]

@knitty kittyAlso, they put me on drip magnesium sulfate post-birth for 24 hours. It was HORRIFIC physically and mentally-- docs had never seen a worse reaction.  Rash started later but Could have been the catalyst for kicking it off?

[RebeccaLMoyer]

On 8/6/2021 at 5:27 PM, cristiana said:

Hi Rebecca

Similarly, I don't have DH but I do now have adult onset eczema so I know how difficult living with extremely irritated skin can be.  I know that there are a few DH sufferers who contribute to this forum and I hope someone will be in touch soon.

Just a suggestion - I could be entirely wrong so I'm hoping others will tell me off straight away if I am! - but I get relief from Epsom Salts baths and I noticed when I searched in this forum DH sufferers have said this helped them in the past, so you might want to give this a try. 

Meanwhile, I echo my friend icelandgirl's words - I really hope you can find some answers soon.

Cristiana

 

 

Thank you! Epsom salts help the skin for sure ♡

[RebeccaLMoyer]

On 8/6/2021 at 4:54 PM, icelandgirl said:

Hi Rebecca,

I don't have DH and am not able to help out in that regard, but I wanted to send you huge (((hugs))) and best wishes for some answers soon so that you can take care of and enjoy your sweet baby!

I do believe that my celiac was triggered by my pregnancy and birth of my youngest.  I was continually sick for the first 2 and a half years of her life and it was so frustrating.

 

Truth sister. Thank you!

[trents]

3 hours ago, RebeccaLMoyer said:

Thank you! Epsom salts help the skin for sure ♡

Epson salt is magnesium sulfate. It has many uses, external and internal. Did you have preeclampsia? It is used for that in drip form.

[knitty kitty]

4 hours ago, RebeccaLMoyer said:

@knitty kittyAlso, they put me on drip magnesium sulfate post-birth for 24 hours. It was HORRIFIC physically and mentally-- docs had never seen a worse reaction.  Rash started later but Could have been the catalyst for kicking it off?

I have awful reactions to sulfates, too.  I can understand how that would be a stressor for the body, but can't say with certainty that was the catalyst.  There's so many contributing factors.

 (I take magnesium citrate orally.  Thiamine needs magnesium to help it work properly.)  

Keep us posted on your progress!

[RebeccaLMoyer]

8 hours ago, trents said:

Epson salt is magnesium sulfate. It has many uses, external and internal. Did you have preeclampsia? It is used for that in drip form.

I did have preeclampsia-- but only post-labor. My BP usually runs low 110/70 and was low throughout pregnancy. Right after labor BP dropped to 70/30, and when it corrected went super high (160/110+) and has not gone back to regulated

...9 weeks later BP is still bouncing between 115/80 and 150/105. I'm taking Procardia 30 to control the highs, but the labile BP is one of the current "unsolved mysteries". (The other being post-labor tremors that never stopped.) Since labor, I've been in the ER twice and also readmitted to hos for several days. The docs don't know what to make of it (per the usual ha)

On the upside! This sweet one♡ Vivianna Grace, afte 4 losses (including her twin)♡ Proof miracles do happen 

[Kate1990]

Hi Rebecca,

Your baby is so beautiful! 🥰 Congratulations!

I just wanted to add a little something about the possible trigger. As others have said in the thread, my experience is also that :

-sometimes it happens the very next day, but other times it's only months after the contamination. It makes it hard to pinpoint the cause, but at least you know it's normal;

-and iodine makes it worse.

I was recently ingesting a tiny bit of gluten every day from a medication (they changed the formulation and the pharmacist didn't check). No DH until 3 months later, when I increased my iodine consumption all of a sudden - so the outbreak was triggered by iodine, but there was gluten present in the first place.

All this to say that I also think that reducing iodine for a little bit could help get you some relief! If you're very sensitive, sometimes we get contaminated by ridiculous things (one time I got sick because my boyfriend used a hand lotion that had trace amounts of gluten in it...). It sounds like you're being extremely careful so it's unlikely to happen repeatedly and I hope all this will be over very soon.

 

[RBnorth66]

I went on the AIP diet twice.  The 2nd time I figured out that I am allergic to ALL grains, including corn, oats and rice.  Corn is in everything.  There is cornstarch in baking powder and powdered sugar.   

I am not allergic to any other foods, just grains.   I was gluten-free for two years, but could never stop taking Dapsone and kept having periodic outbreaks of rash.  

It's been two months now and I no longer need Dapsone and no new outbreaks.  

 

 

 

 

[RebeccaLMoyer]

@RBnorth66Thank you for this info! 

1.With the grain allergies did you break out in DH right away upon ingestion?

2. Did the grain allergies show up on a standard allergy (pinprick test)? 

[RebeccaLMoyer]

On 8/6/2021 at 4:54 PM, icelandgirl said:

Hi Rebecca,

I don't have DH and am not able to help out in that regard, but I wanted to send you huge (((hugs))) and best wishes for some answers soon so that you can take care of and enjoy your sweet baby!

I do believe that my celiac was triggered by my pregnancy and birth of my youngest.  I was continually sick for the first 2 and a half years of her life and it was so frustrating.

Thank you for this!

 

[RebeccaLMoyer]

Thank you for the kind support!

[RebeccaLMoyer]

@Viv1990 Good thoughts. Will do! 

[RBnorth66]

1 hour ago, RebeccaLMoyer said:

@RBnorth66Thank you for this info! 

1.With the grain allergies did you break out in DH right away upon ingestion?

2. Did the grain allergies show up on a standard allergy (pinprick test)? 

With the corn allergy I start itching from 2-4 hours after ingesting.  I tried re-introducing it twice and had to take Dapsone for 3-4 days to stop the itching. 

 I did not take a pinprick test.  My doctor said they are not reliable.   As I was trying to figure this out I went to EXtreme lengths to be sure there was no cross-contamination in my kitchen,  I have the rash almost everywhere on my body, including my scalp.  I had very thick, long hair and almost all of it fell out before I figured this out.

With DH it is really hard to determine the cause of an outbreak since the symptoms are delayed. 

For me, once I had stopped eating ALL grains and went AIP the 2nd time, I slowly stopped taking the Dapsone (I was never able to do that before)  I could actually tell that my immune system response to the grains/food had finally stopped.  I then added other foods, dairy, nuts/seeds, eggs, coffee, chocolate, nightshades.  I added beans last.  

The only flours I use are Cassava, potato, coconut and almond.  I have Tigernut flour but haven't found it to be very useful.  I use the cassava flour with a small mount of potato flour for breading meat to fry, etc.  I am also experimenting with a blend of that for baking.  Since it's only been about two months of no outbreaks I really haven't experimented that much.

When you were on AIP did you get relief from your symptoms?   

I will mention that I did stop taking all supplements while on AIP, except my prescriptions, which I had to take.  They do not seem to affect me.  All personal care products are gluten-free.

I use baking powder and powdered sugar that does not contain cornstarch.   Reading labels is required  since corn or some derivative seems to be in everything.  

I hope you figure it out.  It's very difficult and very frustrating.  Take it easy on yourself.

At some point in this, I realized that I was the only one who could figure it out. 

 

 

[RBnorth66]

On 8/5/2021 at 10:08 AM, RebeccaLMoyer said:

I am a severely sensitive Celiac/DH and brand new mother who is desperate because my illness is making me unable to care for my 8-week old daughter in the way I want to. 

Since her birth I am breaking out in new DH spots every day, sometimes multiple times a day. 

Biopsy came back positive for gluten antibodies ****In spite of ten years of ultra-strict diet& lifestyle ***** (please see below for details). 

I am even breaking out on the Autoimmune Protocol (AIP) diet with 100% adherence. My dermatologist tries, but is not helpful. So...please help, community!

Specifically, I need to know:

1. Did pregnancy change the expression of DH for any other mamas?

2.How long after gluten exposure you break out in new DH?  (To figure out a source)

3. How long can a single exposure trigger a reaction for? (Could accidental CC exposure mid-pregnancy could still be causing it 6 mths later)

4. Any recommendations for dermatologist consults that DO know about DH and practice in Ohio or virtual medicine.

THANK YOU!!!!!! Rebecca 

 

***** I was diagnosed in 2011 and must stress that I am fully educated and compliant with all gluten-free protocols and more. (I eat nothing not made in my own 100% gluten-free kitchen, and have already scoured my life for possible sources. Even the dogfood  & diaper wipes are gluten-free! I brought my own whole food to the hospital for labor.)  The AIP diet is ridiculously strict.

In addition to DH I am dealing with disabling fatigue, neurological, and psychological, and emotional symptoms [not just postpartum,  the brain fog & brain on fire we all know.too well]. I have full body intermittent tremors, labile blood pressure (from 100/70 to 155/110 unmedicated),and can't do gentle yoga or walking without days of recovery time.

I was 70 when I first started breaking out with DH so I can't answer your pregnancy question. 

I have symptoms 2-4 hours after ingesting gluten which includes corn, oats and rice.  

How long my symptoms last depends upon how much gluten I ate.  If it was a miniscule amount, then a few days.  If it was say, a slice of bread (that was supposed to be gluten-free) - several weeks.  Dapsone is the only thing that gives me relief.  I take 50-100 mgs. per day if I have an outbreak.  That said, I haven't had an outbreak for two months - since I stopped eating ALL grains, even the ones that are labeled gluten-free.

My outbreak was severe.  Dapsone was the only thing that relieved the horrible symptoms and that took about three months to work.  At least it seemed like it was working.  For about a year I stopped breaking out except every once in awhile I would accidentally ingest gluten and have an outbreak.  Then I would require more Dapsone.  I stayed on 25-50 mg. per day for two years.  I tried to get off of it, but couldn't.

Then after about 2 years I had a very serious outbreak of rash and it would not stop.  I was eating strict gluten-free.  I was very careful of CT.  I could not figure out where I was getting the gluten from.  Finally, after discussing it with my doctor, I went on the AIP diet in Jan. of 2021.  My rash outbreak stopped for a while and I re-introduced foods, but then it started returning.  I still couldn't figure out which food it was.  

In mid April I went AIP again.  I happened to read a book called No Grain: No Pain.  In the book it explains that other grains have gluten, it's just not the protein "gliadin".  https://www.glutenfreesociety.org/video-tutorials/gluten-sensitivity-what-is-it/   This is a long video that explains it.

It worked for me.  I am so happy to feel healthy again that I don't mind giving up foods with grain.  

I hope you find relief and something that can help you.  

 

 

[RebeccaLMoyer]

@RBnorth66 Thanks for this! I gave up grains, along with everything else not allowed on AIP, without any cheating at all for 6mths plus (which is a horrible way to live). Rash lessened but did not go away. Other symptoms improved enough that I could do a short walk for exercise most days, but not enough to justify the strain so much restriction puts on the rest of life.