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Endoscopy today

Jlewisrn

By Jlewisrn
in Dermatitis Herpetiformis

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Jlewisrn Contributor
Jlewisrn
Posted

I had an endoscopy today and the dr said everything looked good. He took some biopsies but said "you don't have celiac" I cried. Not out of relief but because it's another doctor (and more money) to not know what's wrong with me. This rash is driving me mad. Literally. I could cut out gluten but what if that doesn't work. Then what? Corn, wheat, soy, dairy, foods high in oxalates, salt, cpffee, soda??? Where do I even start? All the dr's know is to prescribe me steroids that don't work. I guess I'll just get doped on on antihistamines. I'm literally getting depressed over this. I was really hoping for answers today. I knew deep down it wouldn't show anything but I was hoping. 

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kareng Grand Master
kareng
Posted

DH need to be biospsied on the skin next to a fresh lesion.  Also, Celiac damage is rarely seems by the naked eye - it requires a microscope.

cyclinglady Grand Master
cyclinglady
Posted

My GI said the same thing, but he warned me that we would have to wait for the pathologist's report.  Guess what?  The report showed moderate to severe patches of intestinal damage.  So, hang in there and just wait for those results.  

GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted

Same here.   Our doctor told us that my daughter does not have celiac right after the endoscopy.   We were overjoyed.   2 weeks later, they called and gave us the test results, and that she does have celiac.

I would wait at least until the actual results before worry about next steps.

Jmg Mentor
Jmg
Posted
4 hours ago, Jlewisrn said:

I could cut out gluten but what if that doesn't work.

What if it does? It did for me despite a negative celiac diagnosis. 

I know you want answers and certainty and you may get them, but if you don't there's still lots you can do to secure the real aim, good health. That's all in the future however and why not cross the bridges when you come to them? 

Gluten-free-01 Enthusiast
Gluten-free-01
Posted
6 hours ago, Jlewisrn said:

Not out of relief but because it's another doctor (and more money) to not know what's wrong with me. This rash is driving me mad. 

Please keep in mind that ‘regular’ doctors, unlike doctors of functional medicine, rarely try to find the root causes of their patients’ problems. I had seborrheic dermatitis a few years ago and, as expected, I got a prescription shampoo and a liquid solution and that was it.

I still respect doctors in general, though, because in many health related situations the ‘classical medicine’ approach is the best/saves your life etc. It really depends on the condition. Gluten sensitivity is much more related to the functional medicine approach, in my opininon.

Even though you haven’t been diagnosed as a celiac a gluten-free diet may still help you because you may be non celiac gluten sensitive.

(Sorry if there are any mistakes – not a native English speaker).

Victoria1234 Experienced
Victoria1234
Posted
1 hour ago, Gluten_free_01 said:

I had seborrheic dermatitis a few years ago and, as expected, I got a prescription shampoo and a liquid solution and that was it.

Did you find something else to help it? I've got sd also and was given a shampoo and cream.

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squirmingitch Veteran
squirmingitch
Posted
9 hours ago, Jlewisrn said:

I had an endoscopy today and the dr said everything looked good. He took some biopsies but said "you don't have celiac" I cried. Not out of relief but because it's another doctor (and more money) to not know what's wrong with me. This rash is driving me mad. Literally. I could cut out gluten but what if that doesn't work. Then what? Corn, wheat, soy, dairy, foods high in oxalates, salt, cpffee, soda??? Where do I even start? All the dr's know is to prescribe me steroids that don't work. I guess I'll just get doped on on antihistamines. I'm literally getting depressed over this. I was really hoping for answers today. I knew deep down it wouldn't show anything but I was hoping. 

As has already been stated, the doctor can't tell by a visual. They can in very rare cases when the damage is so complete as to result in total villous atrophy but it's certainly not the norm. The pathology on the biopsies will tell the tale. I hope he took the recommended 6 biopsies. Get a copy of the pathology report when it comes in.

Gluten-free-01 Enthusiast
Gluten-free-01
Posted
2 hours ago, Victoria1234 said:

Did you find something else to help it? I've got sd also and was given a shampoo and cream.

No, not really.. It wasn't very severe and eventually went away without any special treatment. The Dr. said it might have been caused by stress.   

Gluten-free-01 Enthusiast
Gluten-free-01
Posted

Victoria: I think sd can also be caused by candida so I guess a 'candida diet' could help. No sugar etc. 

Ennis-TX Grand Master
Ennis-TX
Posted
11 hours ago, Jlewisrn said:

I had an endoscopy today and the dr said everything looked good. He took some biopsies but said "you don't have celiac" I cried. Not out of relief but because it's another doctor (and more money) to not know what's wrong with me. This rash is driving me mad. Literally. I could cut out gluten but what if that doesn't work. Then what? Corn, wheat, soy, dairy, foods high in oxalates, salt, cpffee, soda??? Where do I even start? All the dr's know is to prescribe me steroids that don't work. I guess I'll just get doped on on antihistamines. I'm literally getting depressed over this. I was really hoping for answers today. I knew deep down it wouldn't show anything but I was hoping. 

First off again wait for the biopsies to come back in, second NCGS is a real thing and can cause celiac like symptoms but no actual gut damage. If your having DH then those need to tested, Celiacs with DH normally have less intestinal damage but can be more easily diagnosed via skin biopsy taken next to the lesions of the rash.

Wait for testing to be 100% complete then treat this as if you were dia positive for celiac regardless. You will probably feel much better and by the sound of it this could be your cause. Keep a food diary, write down EVERYTHING you eat and how you fix it including seasonings etc. Change up your diet and rotate foods around staying off some seasonings and ingredients for a few days. Record how you feel throughout the day at set intervals. Look for patterns, this is quite enlightening and simplifies matters for other intolerance, and allergy issues.

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