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Information On Dh

PeggyV

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PeggyV Apprentice
PeggyV
Posted

Hi everyone

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Sophiekins Rookie
Sophiekins
Posted

Personally, I find that my DH always looks worst about 7-10 days after I get glutened - it itches like crazy the day I get glutened, and then goes red and blistery a few days later. Medically speaking, gluten can remain active and harmful in your bloodstream for up to 30 days following a glutening - so it's possible you are reacting to something that happened earlier, or that you are missing something in your current diet. Helpful, I know. . . :P

nora-n Rookie
nora-n
Posted

The IgA on the DH lesions is used up, so the biopsy must be done on healthy skin close to it.

IgA gets used up they say.

I wonder if that also applies to other IgA tests...there are some people that make less IgA and it might get used up in teh process.......

The biopsy was done incorrect. Just google for how they should do it.

nora

SpikeMoore Apprentice
SpikeMoore
Posted

Hi Peggy

I had a very similar experience. My GP biopsied a lesion, not the clear skin next to it, and it came back "inconclusive", but like you, I was told that it could be DH. And, like you, I did a little research and the light bulb went on as I linked the digestive symptoms, weight loss, anemia etc. So I started gluten free immediately and had no more episodes. And I felt great and gained 5 pounds. I had been getting an outbreak every 2 weeks or so for 5-6 months.

I went gluten-free for 3 weeks, ate gluten for 4-5 days and had a negative blood test. GP concluded that I do not have celiac. As you will read from the posts here, you cannot draw that conclusion from a negative blood test. I too, felt like a hypochondriac.

I'm not going back on gluten to get a biospy and I'm not going back to part with another chunk of my bottom.

Basically, do what works for you and continue to read the posts from this board. It has helped me immeasurably.

PeggyV Apprentice
PeggyV
Posted
  • Author
Hi Peggy

I had a very similar experience. My GP biopsied a lesion, not the clear skin next to it, and it came back "inconclusive", but like you, I was told that it could be DH. And, like you, I did a little research and the light bulb went on as I linked the digestive symptoms, weight loss, anemia etc. So I started gluten free immediately and had no more episodes. And I felt great and gained 5 pounds. I had been getting an outbreak every 2 weeks or so for 5-6 months.

I went gluten-free for 3 weeks, ate gluten for 4-5 days and had a negative blood test. GP concluded that I do not have celiac. As you will read from the posts here, you cannot draw that conclusion from a negative blood test. I too, felt like a hypochondriac.

I'm not going back on gluten to get a biospy and I'm not going back to part with another chunk of my bottom.

Basically, do what works for you and continue to read the posts from this board. It has helped me immeasurably.

Thanks, I agree with you. Even though I would like to know for sure, I do not want to go back on a gluten diet to prove it. I am thankful I dont have past problems and will continue with this healthy diet.

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    • trents
      High TTG-IgG and Normal TTG-IgA

      By trents · Posted

      Currently, there are no tests for NCGS. Celiac disease must first be ruled out and we do have testing for celiac disease. There are two primary test modalities for diagnosing celiac disease. One involves checking for antibodies in the blood. For the person with celiac disease, when gluten is ingested, it produces an autoimmune response in the lining of the small bowel which generates specific kinds of antibodies. Some people are IGA deficient and such that the IGA antibody tests done for celiac disease will have skewed results and cannot be trusted. In that case, there are IGG tests that can be ordered though, they aren't quite as specific for celiac disease as the IGA tests. But the possibility of IGA deficiency is why a "total IGA" test should always be ordered along with the TTG-IGA. The other modality is an endoscopy (scoping of the upper GI track) with a biopsy of the small bowel lining. The aforementioned autoimmune response produces inflammation in the small bowel lining which, over time, damages the structure of the lining. The biopsy is sent to a lab and microscopically analyzed for signs of this damage. If the damage is severe enough, it can often be spotted during the scoping itself. The endoscopy/biopsy is used as confirmation when the antibody results are positive, since there is a small chance that elevated antibody test scores can be caused by things other than celiac disease, particularly when the antibody test numbers are not particularly high. If the antibody test numbers are 10x normal or higher, physicians will sometimes declare an official diagnosis of celiac disease without an endoscopy/biopsy, particularly in the U.K. Some practitioners use stool tests to detect celiac disease but this modality is not widely recognized in the medical community as valid. Both celiac testing modalities outlined above require that you have been consuming generous amounts of gluten for weeks/months ahead of time. Many people make the mistake of experimenting with the gluten free diet or even reducing their gluten intake prior to testing. By doing so, they invalidate the testing because antibodies stop being produced, disappear from the blood and the lining of the small bowel begins to heal. So, then they are stuck in no man's land, wondering if they have celiac disease or NCGS. To resume gluten consumption, i.e., to undertake a "gluten challenge" is out of the question because their reaction to gluten is so strong that it would endanger their health. The lining of the small bowel is the place where all of the nutrition in the food we consume is absorbed. This lining is made up of billions of microscopically tiny fingerlike projections that create a tremendous nutrient absorption surface area. The inflammation caused by celiac disease wears down these fingers and greatly reduces the surface area needed for nutrient absorption. Thus, people with celiac disease often develop iron deficiency anemia and a host of other vitamin and mineral deficiencies. It is likely that many more people who have issues with gluten suffer from NCGS than from celiac disease. We actually know much more about the mechanism of celiac disease than we do about NCGS but some experts believe NCGS can transition into celiac disease.
    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thank you for the clarification and for taking the time to explain the terminology so clearly. I really appreciate your insight, especially the distinction between celiac disease and NCGS and how anemia can point more toward celiac. This was very helpful for me.
    • Jsingh
      Son's legs shaking

      By Jsingh · Posted

      Hi,  My 7 year daughter has complained of this in the past, which I thought were part of her glutening symptom, but more recently I have come to figure out it's part of her histamine overload symptom. This one symptom was part of her broader profile, which included irritability, extreme hunger, confusion, post-nasal drip. You might want to look up "histamine intolerance". I wish I had known of this at the time of her diagnosis, life would have been much easier.  I hope you are able to figure out. 
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      My 5yo was diagnosed with celiac last year by being tested after his sister was diagnosed. We are very strict on the gluten-free diet, but unsure what his reactions are as he was diagnosed without many symptoms other than low ferritin.  He had a school party where his teacher made gluten-free gingerbread men. I almost said no because she made it in her kitchen but I thought it would be ok.  Next day and for a few after his behavior is awful. Hitting, rude, disrespectful. Mainly he kept saying his legs were shaking. Is this a gluten exposure symptom that anyone else gets? Also the bad behavior? 
    • trents
      Bob red mill gluten free oats

      By trents · Posted

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