Negative Biopsy and feeling defeated

[mamabear42]

Going on 9 years if this horrible rash.  I have had doctors tell me everything from bed bugs, scabies, allergies, STRESS, and more.  I have attache 2 photos, although typically I get them in clusters.  I started a gluten free diet January 1 and slowly reintroduced cheese.  When the rash started to come back I had the biopsy done, still not eating gluten ( I did slip up twice).  But for the most part being gluten free helped immensely.  I also have on again off again tummy problems, but always assumed everyone did.  Now I am not so sure.  I do not know what to do next or how to find a solution.  Ideas? 

[Jmg]

Hello and welcome

1 hour ago, mamabear42 said:

Going on 9 years if this horrible rash.  I have had doctors tell me everything from bed bugs, scabies, allergies, STRESS, and more.  I have attache 2 photos, although typically I get them in clusters.  I started a gluten free diet January 1 and slowly reintroduced cheese.  When the rash started to come back I had the biopsy done, still not eating gluten ( I did slip up twice).  But for the most part being gluten free helped immensely.  I also have on again off again tummy problems, but always assumed everyone did.  Now I am not so sure.  I do not know what to do next or how to find a solution.  Ideas? 

Don't despair. I know just what its like to go in expecting the explanation you've been waiting for and being told the biopsy results are negative, It's a very weird situation to be in where you'd rather be told you had a serious condition because at least then you'd have some certainty and could begin to get better?

You've done the right thing in pursuing a diagnosis. Just review with us exactly what was done just in case a step was missed.

Was the biopsy of the rash or an endoscopy?

Didyou have any celiac blood tests? What results did you have?

Was the biopsy taken by the rash or on it? 

Were you eating gluten before and during all tests?

Don't think that the negative means you haven't found an answer. You need to pursue good health, which is always the ultimate goal in any case? You've got one piece of the puzzle already:  ' for the most part being gluten free helped immensely' that means you're probably either celiac and its not shown up on the test or non celiac gluten sensitive or NCGS  which is basically the medical profession's name for  someone who responds positively to the gluten free diet but doesn't show up on the celiac tests.  The good news is that gluten free can still work for you, it did for me. 

But first things first. Don't panic, don't despair and tell us a little more about what you've been through

Best wishes,

Matt

[mamabear42]

Thank you Matt!  Those were some kind words.  Let me take it all the way back.  I am currently 35, at 26 I had my third baby.  During that pregnancy I started to develop this rash on my legs.  Specifically behind my knees.  It was the itching that would wake you from a dead sleep.  My family doctor at the time suggested fleas, bed bugs, and scabies.  He has very sure it was some kind of bug bite.  They would not go away no matter what I did, until after I had my daughter.  Then I would see one or two clusters once in awhile.  During that time I learned not to scratch or they got much worse.  Breaking open the blisters meant it would have to heal which took longer.

I noticed around 29-30 that I seemed to get them when I started a new diet, as I was prone to do after having my children.  At that time i tried my own variation of the elimination diet and thought maybe I could not eat nuts.  My family doctor order  an allergy panel.  This panel said I was allergic to trees and a light allergy to wheat.  He was very insistent that it was not the same as gluten though.  He did insist however that I carry an epipen and stay away from nuts, based only on my hunch. 

This last fall I start a ketogenic diet.  I felt great and was losing weight.  I had a cheat day here and there and encountered the worst (what I call a flare) since my last pregnancy.  I took prednisone on 4 separate occasion at the advise of my family doctor, including a shot.  These blister rashes would not go away.  I made an appt. with a functional Medicine Clinic and felt like I was finally heard.  The first thing she asked was about Celiacs.  We did not test for it that day, however, we did a huge amount of bloodwork.   I started their elimination diet and my skin cleared completely up.  I maintained that diet for 1 month then fell a little off the wagon at an anniversary dinner.  The rash started again.  I maintained gluten free despite that 1 oopsie and I requested a biopsy.  That biopsy was negative.  I have included some of my bloodwork results below but not all of it.  I do not know my family history on my father's side.  My mother's side does not have any evident autoimmune.  I do however have keratosis pilaris.  

 

Please ask me any questions!

 

Fasting Bloodwork

 

Glucose 108 mg/dL

DHEA-S   409.1

Vitamin D 12.2

No allergies to Nuts 

[Jmg]

Ok, obviously, I'm NOT A DOCTOR... t is suggestive however of celiac. Search this forum and you'll find many women whose symptoms were brought on by pregnancy. The DH rash is typically symmetrical, would you say your rash appears on both legs say? Also its interesting that your flare up came after the keto diet. For a lot of people when they remove something problematic then reintroduce it the response is much worse. That's certainly the case for me with gluten and dairy also. 

Just on the biopsy. Was this of your skin or was it an endoscope (camera pipe down stomach looking for celiac damage).  If it was skin then it has to be done near an outbreak but not on it. 

Also have you had a celiac blood test? 

[mamabear42]

Hi thank you!   This was a skin biopsy one of the “hive” and one right beside it of skin with no hive.  They seem symmetrical on my legs or arms. When it happened to my ears it was both ears.  Occasionally I will just get a random patch.  Currently fighting one on my face.  They did not do celiac blood work while I was eating gluten.  Hindsight is 20/20. Lol

[mamabear42]

32 minutes ago, Jmg said:

Ok, obviously, I'm NOT A DOCTOR... t is suggestive however of celiac. Search this forum and you'll find many women whose symptoms were brought on by pregnancy. The DH rash is typically symmetrical, would you say your rash appears on both legs say? Also its interesting that your flare up came after the keto diet. For a lot of people when they remove something problematic then reintroduce it the response is much worse. That's certainly the case for me with gluten and dairy also. 

Just on the biopsy. Was this of your skin or was it an endoscope (camera pipe down stomach looking for celiac damage).  If it was skin then it has to be done near an outbreak but not on it. 

Also have you had a celiac blood test? 

Also (and this is way TMI) I get the hives on my anus or butt cheeks. 

[Posterboy]

1 hour ago, Jmg said:

Ok, obviously, I'm NOT A DOCTOR... t is suggestive however of celiac. Search this forum and you'll find many women whose symptoms were brought on by pregnancy.

mamabear42,

Here is a good thread that always helpful Jmg mentioned on Pregnancy as a possible trigger for your Celiac symptom's.

your experience summs up the very well article on it well.

I will quote from a notable section of the article. 

"First Comes Baby, Then Comes Symptoms

"Most women are diagnosed with celiac disease after at least one pregnancy — in fact, a comprehensive Italian study published in 2010 on the reproductive effects of celiac found that 85.7% of women received their celiac diagnosis following their first pregnancy.

But that statistic doesn't necessarily mean anything. Many women have their first baby in their 20s or early 30s, and celiac disease diagnosis tends to occur a little later in life — in your late 30s, 40s or even 50s and beyond. Delays in diagnosis (even in Italy, which tends to be more celiac-aware than some other countries) could mean the women in the study actually had celiac long before they learned they did."

I hope this is helpful.

posterboy by the grace of God,

[cyclinglady]

Matt has given you excellent advice.  I just want to toss in your fast blood glucose at 108.  Maybe it is time to get back on that keto diet or cut down on carb?  Your result is prediabetic.  Do not let that go!  A change in diet now and you might not ever progress to full-blown diabetes.  Research and talk to your doctor about an HA1C test.  

Open Original Shared Link

I have celiac disease diagnosis.  While it is very nice to have (more family and medical support), you can go gluten free like my hubby.  Seventeen years!  Only a nut or a person who knows that gluten makes him sick would adhere to the diet.  Feeling good is what counts!  

[mamabear42]

I am still doing Keto and am down 20 lbs!  I limit my carbs and I do t mess with sugar.  

[squirmingitch]

You quit eating gluten. You have to keep eating gluten every single day EVEN for the dh biopsy.

[artistsl]

17 hours ago, mamabear42 said:

Thank you Matt!  Those were some kind words.  Let me take it all the way back.  I am currently 35, at 26 I had my third baby.  During that pregnancy I started to develop this rash on my legs.  Specifically behind my knees.  It was the itching that would wake you from a dead sleep.  My family doctor at the time suggested fleas, bed bugs, and scabies.  He has very sure it was some kind of bug bite.  They would not go away no matter what I did, until after I had my daughter.  Then I would see one or two clusters once in awhile.  During that time I learned not to scratch or they got much worse.  Breaking open the blisters meant it would have to heal which took longer.

I noticed around 29-30 that I seemed to get them when I started a new diet, as I was prone to do after having my children.  At that time i tried my own variation of the elimination diet and thought maybe I could not eat nuts.  My family doctor order  an allergy panel.  This panel said I was allergic to trees and a light allergy to wheat.  He was very insistent that it was not the same as gluten though.  He did insist however that I carry an epipen and stay away from nuts, based only on my hunch. 

This last fall I start a ketogenic diet.  I felt great and was losing weight.  I had a cheat day here and there and encountered the worst (what I call a flare) since my last pregnancy.  I took prednisone on 4 separate occasion at the advise of my family doctor, including a shot.  These blister rashes would not go away.  I made an appt. with a functional Medicine Clinic and felt like I was finally heard.  The first thing she asked was about Celiacs.  We did not test for it that day, however, we did a huge amount of bloodwork.   I started their elimination diet and my skin cleared completely up.  I maintained that diet for 1 month then fell a little off the wagon at an anniversary dinner.  The rash started again.  I maintained gluten free despite that 1 oopsie and I requested a biopsy.  That biopsy was negative.  I have included some of my bloodwork results below but not all of it.  I do not know my family history on my father's side.  My mother's side does not have any evident autoimmune.  I do however have keratosis pilaris.  

 

Please ask me any questions!

 

Fasting Bloodwork

 

Glucose 108 mg/dL

DHEA-S   409.1

Vitamin D 12.2

No allergies to Nuts 

Did they perform biopsies to look for EOE? It can occur anywhere in the digestive tract. It’s an allergy response that occurs in your digestive tract. Blood work can be negative, but biopsy can be positive. You mentioned environmental allergies so that got me thinking. 

[knitty kitty]

On 2/27/2018 at 2:01 PM, mamabear42 said:

Thank you Matt!  Those were some kind words.  Let me take it all the way back.  I am currently 35, at 26 I had my third baby.  During that pregnancy I started to develop this rash on my legs.  Specifically behind my knees.  It was the itching that would wake you from a dead sleep.  My family doctor at the time suggested fleas, bed bugs, and scabies.  He has very sure it was some kind of bug bite.  They would not go away no matter what I did, until after I had my daughter.  Then I would see one or two clusters once in awhile.  During that time I learned not to scratch or they got much worse.  Breaking open the blisters meant it would have to heal which took longer.

I noticed around 29-30 that I seemed to get them when I started a new diet, as I was prone to do after having my children.  At that time i tried my own variation of the elimination diet and thought maybe I could not eat nuts.  My family doctor order  an allergy panel.  This panel said I was allergic to trees and a light allergy to wheat.  He was very insistent that it was not the same as gluten though.  He did insist however that I carry an epipen and stay away from nuts, based only on my hunch. 

This last fall I start a ketogenic diet.  I felt great and was losing weight.  I had a cheat day here and there and encountered the worst (what I call a flare) since my last pregnancy.  I took prednisone on 4 separate occasion at the advise of my family doctor, including a shot.  These blister rashes would not go away.  I made an appt. with a functional Medicine Clinic and felt like I was finally heard.  The first thing she asked was about Celiacs.  We did not test for it that day, however, we did a huge amount of bloodwork.   I started their elimination diet and my skin cleared completely up.  I maintained that diet for 1 month then fell a little off the wagon at an anniversary dinner.  The rash started again.  I maintained gluten free despite that 1 oopsie and I requested a biopsy.  That biopsy was negative.  I have included some of my bloodwork results below but not all of it.  I do not know my family history on my father's side.  My mother's side does not have any evident autoimmune.  I do however have keratosis pilaris.  

 

Please ask me any questions!

 

Fasting Bloodwork

 

Glucose 108 mg/dL

DHEA-S   409.1

Vitamin D 12.2

No allergies to Nuts 

Mamabear, 

Did your doctor address your Vitamin D deficiency?  Twelve is seriously low.  Minimums are about forty, but seventy or higher is much better for you.  You will have to supplement to get it higher.  The synthetic form is D2 and is often prescribed, but D3 is the natural form and better utilised by the body.

Celiac Disease often causes malabsorption of fats and fat soluble vitamins like vitamins A, D, E and K and essential fatty acids.  If you're that low in Vitamin D, you may very well be deficient in the other fat soluble vitamins, too.  My Vitamin A was very low, as was my Vitamin D,  and I had skin and eye problems.  Keratosis pilaris is connected to Vitamin A deficiency.

Skin is the largest organ of the body and requires lots of fatty acids and those fat soluble vitamins to function properly.  (You know how oil and water don't mix? Same principle works in skin.  Oils in skin keep watery body fluids inside.)  

One thing to do on a Paleo diet is to ensure you get enough healthy fats like olive oil, flaxseed oil, and coconut oil. These oils are good sources of those fatty acids, omega 3's and 6's,  that the skin and the brain need.  Fatty fish like salmon are also good sources.  

DH flares are often triggered by high levels of iodine in your diet.  Seaweed, eggs and cranberries make mine flare.  I've even switched to Kosher salt (no added iodine).  

Hope this helps

 

[mamabear42]

Thank you!   I am considering cutting out the dairy and eggs and seeing is it helps.  We didn’t check vitamin A but that may be a good next step.