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New Dh- So Many Questions!


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6 replies to this topic

#1 ItchyMeredith

 
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Posted 22 June 2007 - 07:24 PM

Hi-
This is my first time at this board. I am really excited to find it. My mind is reeling because I have been trying to figure out this rash for 2 yeas and my dermatologist just left a message on my phone saying that my skin biopsy shows that it is DH and I need to go gluten free. I feel like it was a hit and run phone call because that is all he explained. I have been all over the internet today and the rash I have does indeed look like DH. This seems so random to me. I thought I was allergic to pregnancy or breastfeeding hormones because the two times I have had this rash it manifested when I was 2 months post partum with my 2 boys. Has anyone heard of that? I have a few questions and ANY advice would be greatly appreciated.

*Is this related to celiac disease?

*Does this mean I have celiac or should be tested? I am concerned because my grandmother died of stomach and colon cancer. She had digestive problems all of her adult life but lived in Colombia so may have not been diagnosed properly.

*What harm would it do if I didnít change my diet?

*Does the rash have any long term effects if left untreated?

*Can hormones exasperate the problem or are my pregnancies coincidental?

Thank you all for your time! This has been quite a day and I am very interested in learning all I can about this.
Always Itchy,
Meredith
  • 0
DH positive skin biopsy June 2007
Blood test positive July 2007
Gluten Free- since 6-23-07
Vegetarian since 1991


Stay-at-home Mommy to:
Kellen 2-05
Cameron 10-06
Scarlett 5-09

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#2 Ursa Major

 
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Posted 22 June 2007 - 08:21 PM

Hi Meredith, and welcome to these boards.

I will try to answer your questions as best as I can.

*Is this related to celiac disease?

Not only is it related to celiac disease, having DH means that you have celiac disease.

*Does this mean I have celiac or should be tested? I am concerned because my grandmother died of stomach and colon cancer. She had digestive problems all of her adult life but lived in Colombia so may have not been diagnosed properly.

As I said in my previous answer, you have celiac disease, no more testing needed. Everybody with DH automatically has a firm celiac disease diagnosis, but not everybody with celiac disease will have DH. It is very likely that your grandmother had celiac disease. My mother died of liver cancer, and her mother died of stomach cancer. I inherited it from them, as it is genetic.

*What harm would it do if I didnít change my diet?

You would likely end up like your grandmother. Undiagnosed people with celiac disease, or the ones who refuse to go on the gluten-free diet usually end up dying of intestinal cancers years ahead of their time.

*Does the rash have any long term effects if left untreated?

No, I don't believe it does. But the gluten will cause other damage throughout your body, which can include intestinal damage, malabsorption, osteoporosis, brain damage, neurological problems like neuropathies and ataxia, depression, schizophrenia, MS, fibromyalgia, and a host of other problems.

*Can hormones exasperate the problem or are my pregnancies coincidental?

Yes, pregnancy can trigger celiac disease. As can other stress or an illness.
  • 1
I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

#3 April in KC

 
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Posted 03 July 2007 - 07:16 AM

Meredith, I almost mentioned hormones in my other post to you, but I wanted to stick with the question you asked. Then I saw this post. I do seem to have some type of hormonal fluctuations with my DH and Celiac symptoms.

Are you still nursing, or weaned? I have three boys, and I just weaned my third son at 1 year. I only figured out the DH/Celiac thing in the last four or five months because symptoms were flaring - but I have had mild symptoms (and not so mild, just didn't know brain fog was related) for years. I have heard pregnancy and/or childbirth can be a trigger for many women, and this seemed to be the case with me, at least a trigger for my normally mild symptoms to go into "high gear."

I have been breastfeeding for the past year, so I have not had cycles. Recently, when I had my first cycle, it was accompanied by several days of DH / Celiac symptoms. I have heard others post that their symptoms get worse. In the past, long before diagnosis, I sometimes had canker sores that would show up along with my period. I also had some miscarriages with accompanying mouth sores. Now I know that canker sores are part of my personal symptoms of glutening.

April
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#4 YvetteF

 
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Posted 15 April 2012 - 05:40 AM

Hi-
This is my first time at this board. I am really excited to find it. My mind is reeling because I have been trying to figure out this rash for 2 yeas and my dermatologist just left a message on my phone saying that my skin biopsy shows that it is DH and I need to go gluten free. I feel like it was a hit and run phone call because that is all he explained. I have been all over the internet today and the rash I have does indeed look like DH. This seems so random to me. I thought I was allergic to pregnancy or breastfeeding hormones because the two times I have had this rash it manifested when I was 2 months post partum with my 2 boys. Has anyone heard of that? I have a few questions and ANY advice would be greatly appreciated.

*Is this related to celiac disease?

*Does this mean I have celiac or should be tested? I am concerned because my grandmother died of stomach and colon cancer. She had digestive problems all of her adult life but lived in Colombia so may have not been diagnosed properly.

*What harm would it do if I didnít change my diet?

*Does the rash have any long term effects if left untreated?

*Can hormones exasperate the problem or are my pregnancies coincidental?

Thank you all for your time! This has been quite a day and I am very interested in learning all I can about this.
Always Itchy,
Meredith


Hello, Hello!!! I know it's been a few years since you posted this but maybe you'll be able to respond...if not, someone else? This is the only place that I've seen someone else talking about relationship between pregnancy/nursing hormones and Celiacs disease.

For almost 4 years, I've been misdiagnosed with Psoriasis (I just NOW found out that I have DH!). I always thought that somehow my psoriasis is itchier than others' and I scratched so much that it never got to form the typical "plaques". I'm relieved to know now what it is!

I've known for 2 years that gluten affects my DH (always thinking it was psoriasis) and I've been on and off, sometimes stricter than other times, but never thinking i had celiacs disease. I finally took the test (motivated by cousin who's been diagnosed with celiacs for 1+year and after 1year gluten-free went from 80antibodies to 3) and found out 3 weeks ago that of course, in fact, i have Celiacs disease (110antibodies--not really sure what it means, eventually i'll find out).

I've ALWAYS had GI problems.
Was diagnosed with Lactose-Intolerant at 11. Stopped drinking milk. Kept eating cheese and ice cream. Since then, I've been on and off, mostly on, dairy of some sort (I'm 35 years old).
Diagnosed with Hiatal Hernia in 2005. Did nothing.
Diagnosed with GERD in 2001/2002. One year of limited talking. Some diet changes.
My first DH reaction came when nursing baby #1 at about 10 mos old. Was soon after misdiagnosed with Psoriasis.
Dealt with DH "Psoriasis" in different ways: homeopathy, sugar-free diet, macrobiotic diet (here, i realized with help of my aunt, that the gluten seemed to be the trigger for the DH.
I nursed child #1 til she was 3. After was when I had my first experience of gluten-free diet and it's positive effects.
I got pregnant. DH came back and with force! It didn't seem to matter if I was gluten-free or not, so I decided to eat gluten--of course!
Through acupuncture and meditation, I was able to calm the DH--but not get rid of it.
Then, at 3-4 months preg: went gluten-free again and it helped. Big time. Got rid of DH.
Gave birth.
Milk came in next day, and so did DH--ALL over my body!
Just now, literally, self-diagnosed with DH, I don't have Psoriasis at all!

Okay, so, now baby is 11 months old, still nursing. I've been gluten-free for 3 weeks (pretty strict, with some accidental gluten ingestion...i live in spain and i'm still learning what products i need to be careful of).
Feeling overwhelmed lately because (what I thought was Psoriasis) the DH, isn't going away, AT ALL! If fact it seems to be getting worse or at least is staying steady, still growing daily and is almost as bad as ever.

In the past (i think even since baby #2 was born), going off gluten (not even 100%, eating probably contaminated oats) proved to be effective in calming the DH...Not now.

So, I'm aware that it takes a good 6-9 months to rid my body of gluten. It would be helpful for me to hear from anyone their story, if it relates to mine, and anything Inspiring would be REALLY helpful!!

DH does go away eventually with a gluten-free diet?

Is it possible that a grain-free diet might be in order?

Dairy free?

Any related comments appreciated!

Thank you, Yvette
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#5 pricklypear1971

 
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Posted 15 April 2012 - 08:44 AM

I developed mastitis about 2 weeks pp. then I got a yeast infection on my chest that multiple rounds of diflucan wouldn't fix. I soaked in tubs of Aveeno, tried tinctures, everything...sound familiar???

Only thing that solved it was to stop nursing (btw son would not nurse so I was pumping ALL DAY and NIGHT).

I had one red spot near my bra line forever, finally went away years later, would pop up periodically.

So yes, have experienced pregnant/hormone/nursing related DH. It sucks.

You may try a low iodone diet to see if it help you. Google "thyca". It gives guidelines on a li diet for people undergoing thyroid irradiation. Very helpful. A good chunk of people who have DH are iodine sensitive and must cut back on it for a while to rein in DH.

The other thing to look at is a sensitivity to salicylates. Again, high levels are known to aggrivate and cause DH to flare. Sals are tough since they are in most every food and are cumulative: http://salicylatesensitivity.com/
  • 0
Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#6 Di2011

 
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Posted 20 April 2012 - 03:02 AM

Hello, Hello!!! I know it's been a few years since you posted this but maybe you'll be able to respond...if not, someone else? This is the only place that I've seen someone else talking about relationship between pregnancy/nursing hormones and Celiacs disease.

For almost 4 years, I've been misdiagnosed with Psoriasis (I just NOW found out that I have DH!). I always thought that somehow my psoriasis is itchier than others' and I scratched so much that it never got to form the typical "plaques". I'm relieved to know now what it is!

I've known for 2 years that gluten affects my DH (always thinking it was psoriasis) and I've been on and off, sometimes stricter than other times, but never thinking i had celiacs disease. I finally took the test (motivated by cousin who's been diagnosed with celiacs for 1+year and after 1year gluten-free went from 80antibodies to 3) and found out 3 weeks ago that of course, in fact, i have Celiacs disease (110antibodies--not really sure what it means, eventually i'll find out).

I've ALWAYS had GI problems.
Was diagnosed with Lactose-Intolerant at 11. Stopped drinking milk. Kept eating cheese and ice cream. Since then, I've been on and off, mostly on, dairy of some sort (I'm 35 years old).
Diagnosed with Hiatal Hernia in 2005. Did nothing.
Diagnosed with GERD in 2001/2002. One year of limited talking. Some diet changes.
My first DH reaction came when nursing baby #1 at about 10 mos old. Was soon after misdiagnosed with Psoriasis.
Dealt with DH "Psoriasis" in different ways: homeopathy, sugar-free diet, macrobiotic diet (here, i realized with help of my aunt, that the gluten seemed to be the trigger for the DH.
I nursed child #1 til she was 3. After was when I had my first experience of gluten-free diet and it's positive effects.
I got pregnant. DH came back and with force! It didn't seem to matter if I was gluten-free or not, so I decided to eat gluten--of course!
Through acupuncture and meditation, I was able to calm the DH--but not get rid of it.
Then, at 3-4 months preg: went gluten-free again and it helped. Big time. Got rid of DH.
Gave birth.
Milk came in next day, and so did DH--ALL over my body!
Just now, literally, self-diagnosed with DH, I don't have Psoriasis at all!

Okay, so, now baby is 11 months old, still nursing. I've been gluten-free for 3 weeks (pretty strict, with some accidental gluten ingestion...i live in spain and i'm still learning what products i need to be careful of).
Feeling overwhelmed lately because (what I thought was Psoriasis) the DH, isn't going away, AT ALL! If fact it seems to be getting worse or at least is staying steady, still growing daily and is almost as bad as ever.

In the past (i think even since baby #2 was born), going off gluten (not even 100%, eating probably contaminated oats) proved to be effective in calming the DH...Not now.

So, I'm aware that it takes a good 6-9 months to rid my body of gluten. It would be helpful for me to hear from anyone their story, if it relates to mine, and anything Inspiring would be REALLY helpful!!

DH does go away eventually with a gluten-free diet?

Is it possible that a grain-free diet might be in order?

Dairy free?

Any related comments appreciated!

You have been on the journey for a while already.

You should in investigate iodine and salicylate intolerance as these are VERY often a problem with DH.
Thank you, Yvette


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#7 squirmingitch

 
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Posted 20 April 2012 - 05:02 AM

Remember ---- this was originally posted in June of 2007. I doubt the OP is still around.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 





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