Does this look like d.h.?

[Laurel F]

Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema. 

To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.

Now my legs look like I have d.h. again. 

Does it look like d.h.? Should I push for yet another endoscopy or just diagnose myself? I do not want to have to limit gluten from my diet unnecessarily because my son has life-threatening allergies to several foods which we strictly avoid. It was hard to cook avoiding gluten while avoiding all his allergens, too.

 

Thanks! 

[Wheatwacked]

Sprue is another name for Celiac Disease. Your eczema could be caused by a vitamin D deficiency as a result of comorbid malabsorption syndrome. Google it. Regardless of cause, you appear to do better without the gluten and your doctors cannot explain. Your biopsy showed improvement with GFD and your rash returned when you eat it. It seems like a no brainer, except that massive advertising has convinced us that wheat is a vital part of our diet. The only essential nutrition from wheat products are the added vitamins and some calories. So, what is important, your diagnosis or your well being? I suggest going gluten free and finding a physician not in denial about the effects of malnutrition. The advantage of modern wheat is that it will continue to increase yield as long as you give it water and fertilizer. Could those same proteins be the cause of the fattening of America?

Quote

The digestion of proteins, carbohydrates, and lipids is compromised due to decreased pancreatic and biliary secretion. The absorption of the digestive products is also severely affected due to decreased activity of microvillus enzymes (dipeptidases and disaccharidases) Tropical sprue is cured by treatment with tetracycline and folic acid, whereas nontropical sprue responds to a gluten-free diet. Nontropical sprue is associated with dermatitis herpetiformis by common genetic and morphological features, and the skin lesions in dermatitis herpetiformis are also responsive to a gluten-free diet. Finally, there appears to be an increased incidence of intestinal malignancies (lymphoma, adenocarcinoma) in nontropical sprue. https://www.ncbi.nlm.nih.gov/pubmed/3909813

 

[cyclinglady]

There is no cure for celiac disease which is an autoimmune disorder.    The only cure for celiac disease and Dermatitis Herpetiformis (skin form)  is a strict gluten free diet.    Although not immediately life-threatening, celiac can kill.  Children used to die from it due to malnutrition back before WWI.  

It is possible to live carefully in a shared kitchen. Baking with wheat flour is not recommended as it can hang in the air.  You can breathed it in and swallow it causing an autoimmune flare up.  

You have a firm diagnosis.  You even were able to heal that villi!  What more proof do you need?  DH sufferers even have to be more careful.  I guess maybe not if you can stand the horrible itching and sincerely hope it does not spread to the rest of your body.  But know that you can go on to develop additional autoimmune  disorders like Type 1 diabetes (it is no longer called juvenile diabetes), autoimmune thyroid, lupus, Rheumatoid Arthritis, ......just pick one of many.  I have three autoimmune and I am working like crazy to prevent more from developing by at least keeping my celiac disease in remission. Your risk for intestinal cancer goes up too!  

I am a mother.  I get the allergies.  I have them and my family is riddled with them (EPI pens stashed everywhere), but a sick or dead mother is useless to her child.   Harsh?  Maybe.  But my first concern actually is your child!  BTW, get him tested!  I never tested positive to wheat on any allergy (IgE) testing!  Wheat  allergies and celiac disease are not the same.  You can even have both.

Please read through the DH section of the forum.  There is a lot of valuable advice.

Get help.  Ask to see a dietitian who can help you work safely in your kitchen.  Please take care of yourself!  

 

[squirmingitch]

On 2/11/2019 at 9:42 AM, Laurel F said:

To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.

It looks like dh but there are many skin conditions that can look like dh. I can clearly see that you are scratching it like mad which means it's itching like mad & dh is called the suicidal itch. 

But here's the thing....in your statement I quoted above, you say you don't have bowel issues like you did years ago. With dh, we tend NOT to have as many or as severe GI issues b/c the antibodies have deposited under our skin. We still have gut damage but it tends to be patchier than celiacs who do not have dh.

Cyclinglady has great advice for you. You should heed it.

[GFinDC]

Hi Laurel,

DH is diagnosed by taking a small biopsy sample of skin next to (but not on) a skin lesion.  You can go to a dermatologist for testing.  You don't need an endoscopy to test for DH.  DH is a presentation of celiac where the antibodies attack the skin.

Some of us have additional food intolerances beyond just gluten.  There is a possibility that the longer we have uncontrolled irritation/inflammation in our GI tract, the more foods we can become intolerant to.

https://duckduckgo.com/?q=dermatologist+celiac+in+massachusetts+today&t=h_&ia=web

 

[Posterboy]

On 2/11/2019 at 8:42 AM, Laurel F said:

Does it look like d.h.? Should I push for yet another endoscopy or just diagnose myself? I do not want to have to limit gluten from my diet unnecessarily because my son has life-threatening allergies to several foods which we strictly avoid. It was hard to cook avoiding gluten while avoiding all his allergens, too.

Laurel,

We can't diagnosis or treat you but here is some research that might help you decide what is best for you. ..it explains very well how it is diagnosed entitled 'Dermatitis herpetiformis: pathophysiology, clinical presentation, diagnosis and treatment*"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4230654/

what struck me about this research was their notes on correlated diseases IE related conditions that also may be causing your DH like symptom's. ... they say recent research has linked chronic gastritis to DH.

Here is the research for that link entitled "Chronic gastritis in dermatitis herpetiformis: a controlled study."

https://www.ncbi.nlm.nih.gov/pubmed/22611420

I don't know if this helps you are not  ....but it would be consistent your past GI problems. At least it is good to know it not all in your mind!

I hope this is helpful but it is is not medical advice.

2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the Grace of God,

[squirmingitch]

9 hours ago, GFinDC said:

Hi Laurel,

DH is diagnosed by taking a small biopsy sample of skin next to (but not on) a skin lesion.  You can go to a dermatologist for testing.  You don't need an endoscopy to test for DH.  DH is a presentation of celiac where the antibodies attack the skin.

Some of us have additional food intolerances beyond just gluten.  There is a possibility that the longer we have uncontrolled irritation/inflammation in our GI tract, the more foods we can become intolerant to.

https://duckduckgo.com/?q=dermatologist+celiac+in+massachusetts+today&t=h_&ia=web

 

The problem with Laurel getting a dh biopsy is that it requires her to do a gluten challenge just as if she were going to get a celiac serum panel. The same challenge parameters are required.

[cyclinglady]

On 2/11/2019 at 6:42 AM, Laurel F said:

Hi, I have been trying to get a celiac diagnosis for awhile now. I had an endoscopy years ago that showed flatted villi but the biopsy said "possible sprue or possible duodonitis." I went g.f. and had another test a few years later. The villi were normal but I had what I thought was a d.h. rash. The dermatologist said it did not look like d.h. and said it was just eczema. 

To test myself, I started eating gluten again. I have occasional bowel issues but not like I had years ago.

Now my legs look like I have d.h. again. 

Does it look like d.h.? Should I push for yet another endoscopy or just diagnose myself? I do not want to have to limit gluten from my diet unnecessarily because my son has life-threatening allergies to several foods which we strictly avoid. It was hard to cook avoiding gluten while avoiding all his allergens, too.

 

Thanks! 

If you had flattened villi and they recovered on a gluten free diet, you have celiac disease and not one of the many other things that can cause villi damage.    If you have celiac disease, chances are that rash is DH.  DH is celiac disease.  

[GFinDC]

Hi Laurel,

Has your son been tested for celiac disease?  Allergic reactions can be elevated by celiac disease.  At least in my case they were.  I had bad allergies that decreased a lot after going gluten-free.  My theory is the immune system is in overdrive because of celiac disease and so allergy type reactions are kicked up also.  And since celiac disease is gene related, it is important to get all first degree blood relatives tested.