My dermatitis herpetiformis has migrated over my body over the years, and landing lately on my anus/genitals, and while it is terrible, the ONLY thing I’ve found to greatly help discomfort, and *I think* speed healing is Penaten Creme. It’s a German butt cream for babies…worked amazingly on me as a baby, and my mom gave it to me when I had my daughter. One night I was so uncomfortable I thought “it eases her rash, let me try it on mine” and OH MY GOD. Relief.     It has zinc, lanolin, witch hazel among other things. Anyhoo, HIGHLY recommend this for relief. 

Welcome to the forum, @Wormsy22! Yes, unfortunately many doctors are not clear on proper testing protocol for Celiac Disease, much less the treatment. If we remove gluten from our diet, the antibodies our bodies produce against gluten go down.   I went gluten free on my own.  My doctors had laughed at me when I suggested testing for Celiac Disease.  Later, to get a proper diagnosis, I couldn't finish the gluten challenge because my body reacted so extremely.  Symptoms get way worse with reintroduction.  A gluten challenge requires 10 grams (4-6 slices of bread, pizza, etc.) to provoke sufficient antibody production so that the antibodies get into the bloodstream.  Less than 10 grams will make one sick (the antibodies stay in the gut wreaking havoc), but won't elicit sufficient antigluten antibodies in the bloodstream.  I ended up getting diagnosed by DNA testing and improvement on a gluten free diet.  Celiac Disease is genetic.  Having Celiac genes doesn't mean you have active Celiac Disease, just the potential to develop it.  Your genes don't change, so no gluten challenge required.  Improvement on a gluten free diet points to active Celiac genes. If you remove gluten from your diet, you also remove a big source of B vitamins since wheat/gluten containing products are required to be enriched with vitamins lost in processing.  Malabsorption of essential nutrients due to damaged intestines caused by Celiac Disease and reduced sources of vitamins and minerals results in malnutrition, aka vitamin deficiencies.  There's eight B vitamins, each of which are needed for proper nerve and muscle function.  Being low in these vitamins can cause the symptoms you and I have experienced.   Most B vitamins can be stored for a month, but Thiamine B1 can become depleted in as little as three days to three weeks.  Thiamine is needed to produce energy for the cells to function.  So nerve cells misfire, muscle cells misfire, and the brain, where all these messages get sent, is affected.  MRIs showing brain damage caused by Thiamine deficiency is most frequently found postmortem, though changes may be seen before then, and damage is reversible is possible, IF recognized and treated properly and promptly.  My doctors didn't recognize my symptoms of nutritional deficiencies, but having studied microbiology and nutrition at university, I did, as far fetched as it sounded.  I took over-the-counter vitamins and had symptom improvement within an hour.   Look at this study where people (not diagnosed with Celiac Disease nor malabsorption problems) became deficient in Thiamine quickly.  They had no long-term problems because they did Not continue the Gluten free diet like we have to do. Gluten-free diet intervention reduces thiamine intake in two weeks, increases glycaemic response and decreases body weight in four weeks, with no long term nutritional deficiencies https://pubmed.ncbi.nlm.nih.gov/34583628/ More Interesting Reading: Nutritional Deficiencies in Celiac Disease: Current Perspectives https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8703793/ Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Thiamine deficiency disorders: a clinical perspective https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8451766/ Insufficiency of B vitamins with its possible clinical implications https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7417807/ B Vitamins: Functions and Uses in Medicine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/ Hiding in Plain Sight: Modern Thiamine Deficiency https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

Welcome to the forum, Cassie! That was one long sentence! A few periods stuck in here and there would have made it a little more readable. You must have composed it on hour phone. Yes, the biopsy was probably made invalid because you had been on a gluten free diet. The biopsy looks for the damage caused by celiac disease to the lining of the small bowel from the inflammation that eating gluten brings about. Once you remove the gluten from the diet, the inflammation dies down and the small bowel lining begins to heal. Since it is now healed, there is no damage detected by the biopsy. But we hear these kinds of stories on this forum over and over. Physicians fail to give their patients instructions about these things. It is frustrating. If you decide that you want to get the biopsy redone in order to get an official diagnosis of celiac disease you would need to be eating a generous amount of gluten daily for several weeks. The amount of gluten found in 4-6 slices of bread for a month or so should do it. Otherwise, just continue on with the gluten free lifestyle and enjoy your health.

How long has this been goin on? May we ask your age? What you describe sounds like it could be gluten-induced neurological damage of some kind which may not be detectable by testing designed to diagnose other kinds of neurological disorders. And it may not be completely reversible. What is noteworthy is that your symptom list became longer when you went back on gluten/grains. There are many "silent" celiacs. They are those who have no GI distress or so little of it that it does not get their attention as being a symptom of some underlying condition like celiac disease. Nonetheless, there is damage being done to the villous lining of their small bowel, the place where all of our nutrition is absorbed, and eventually they develop nutritional deficiency related medical issues because the ability to absorb the nutrition from the food they consume has become severely compromised. One of those potential medical issues is neurological disease. Have you had an endoscopy done with biopsy of t he small bowel lining? Acid reflux is very common in the celiac population.  Can you be more specific about the "ttg" blood test you had done to check for celiac disease? Was that the ttg-iga? There is more than one type of ttg celiac disease antibody blood test that can be run. Was that the only celiac blood antibody test ordered? More should have been ordered by the physician if so, especially if you had been skimping on gluten intake.

Hi. I'm Cassie and so it was some time back in December of last year I was suspected of Celiac disease through blood tests and major symptoms I was having and so they straight up put me on a gluten free diet and therefore I was though I still needed to go through a biopsy and I did and it came back false and I'm about frustrated with it all due to feeling great after switching my diet over to this life changing way of living yet apparently I had a lot of folk say I should have had some gluten in there in order to tell if I am or not, but i was just doing what my doc said to do and just go gluten free and now I have to go back to get another biopsy I was told was going to have to happen, but that's AFTER I see my doctor and specialist first this month just to find out if that's still a go for that or like what's going on ? Has anyone else gone through this ?? 😭