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Need Help With Diagnosis

jma810

By jma810
in Dermatitis Herpetiformis

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jma810 Newbie
jma810
Posted

I need help figuring out what to do with my 14 year old son. I just found out that I have celiac disease from an EntroLab and saliva test. I had symptoms for over ten years before diagnosis finally. My concern now is my son. All his life he has had constant breakout of this rash on his arms, legs and/or feet. It starts off as patches of blisters. They eventually pop and get infected from scratching. Then they dry up and get leathery. I have taken him to doctors all his life and they just say that it is a bacteria or an allergy. I would usually get them to go away by cleaning up his diet and giving him lots of vitamins. They eventually come back when he has been very busy and active and his system is worn down from so much activity and junk food eating. So I knew this was an immune response because they would go away after mega dosages of vitamins and a clean diet. By clean diet, I would just not let him have junk food and give him more protein and good carbs.

Well he just had another bought of it on his feet and ankles. I did not know about DH until my diagnosis. I took him to a GI to have the blisters tested and she didn't even want to look at them because she said that they are not in the classic location. She did eventually look with some pleading and agreed that they looked like DH. She ran a tissue transglutaminase antibody IGA test and it was negative. Now what? Is this conclusive? Not sure what I should do now? Could I be wrong and maybe it is something else? Incidentally his white blood cell count it below normal as is mine. Thank you for your thoughts. Not sure if I should keep pursuing it of accept the results as is.

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ShayFL Enthusiast
ShayFL
Posted

Welcome to the boards.

First let me say that Enterolab cannot dx Celiac. It can only show gluten intolerance and if you opted for the gene testing it can show if you have the recognized Celiac genes. Having the genes does not mean you have Celiac disease. It just means you have the potential. Also, saliva does not dx Celiac either. It can only show gluten sensitivity.

There is a difference between the two. If you are still eating gluten, you should go to a doctor and ask for a full Celiac panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

Then based on the results of these, you may need a biopsy. This is how you can be dx Celiac. There is no other way for an official dx. Anything else might just be an intolerance.

No that test was not sufficient for your son. A dermatologist needs to biopsy the healthy skin right next to the outbreak (not the lesions). This is how DH/Celiac is dx. And he should have a full blood panel (above) as well.

I hope this helps.

jma810 Newbie
jma810
Posted
  • Author

Thank you, ShayFL.

I did not know that Entrolab did not dx celiac disease. My dr told me I was based on that test. I do have the gene also. I never had the blood tests done, but have now been gluten-free for 3 months. The Entrolab showed that I have severe levels of malabsorption. So I have been afraid to dare eat gluten again. I also showed an immune response to dairy and soy. I was dx two years ago with hashimotos. It has been a long journey and now this too. :(

Does he had to have an active rash to get the biopsy? They are just healing up now. I hope I can get him before they go away completely. Though...they will be back again.

Thanks again!!! BTW, I am in Tampa too. Go Rays !!

ShayFL Enthusiast
ShayFL
Posted

Another Tampa person....cool. :)

Yes there has to be an active outbreak of DH to get a proper biopsy.

Here is the thing with Enterolab. Most doctors do not recognize it as a valid testing tool. Dr. Fine has not published his work for peer review, therefore, most regular M.D.s will not even look at it. They believe an official dx is only possible with the full Celiac blood panel and a biopsy. Celiac genetic testing is not even necessary for most doctors.

If you have the genes, showed signs of malapsorption and gluten intolerance PLUS a positive response to the diet. You have your answer. If your doctor dx Celiac, then go with that and do not worry about what any future doctors might say to convince you otherwise. And do not be concerned with people on this board who will say you do not have Celiac because you do not have an official dx via blood and biopsy.

There are many hair splitters in here. :blink:

Just stick with what you are doing which is a gluten-free diet. Know it is for life. And keep healing!

As for your Son, he will need an active outbreak to get the biopsy. The good news is that would be ALL he needed if it comes up POS. I know you dont want to feed him gluten, but if you could get that rash to come back and get over to the Dermo ASAP you could get your answer and get on with healing.

jma810 Newbie
jma810
Posted
  • Author

Thank you, ShayFL. Appreciate your thoughts. :)

ravenwoodglass Mentor
ravenwoodglass
Posted

If you don't want to feed gluten to create the rash one other less invasive way to get the rash to come up for biopsy would be to coat the inside of his arm, an area that could be covered by a small bandaid, with some iodine. This needs to be actually iodine and you should be able to find it at a pharmacy. Topical application of iodine will bring up a DH rash in those that have it, it was an oldtime way of diagnosing. If a rash forms you could then head to the derm. Do keep in mind that DH is not the only skin problem associated with celiac but it is the only one that is a conclusive diagnosis.

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      By knitty kitty · Posted

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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      High DGP-A with normal IGA

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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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