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  1. trents

    trents

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  2. knitty kitty

    knitty kitty

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    Scott Adams

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Popular Content

Showing content with the highest reputation since 03/24/2024 in all areas

  1. Helen Vajk
    Celiacs should also have the right to complete labeling of gluten presence in medications, and all essential medications should be manufactured gluten free.
    3 points
  2. Celiac16
    @PosterboyThanks for the article - it definitely helped when I was looking into thiamine and niacin for celiacs. Interesting too is that schizophrenia has been linked with undiagnosed celiacs and in orthomolecular therapy is treated like pellagra with high dose niacin. I have supplemented with both and have benefited from them… they are kind of counterparts i...
    3 points
  3. Helen Vajk
    Hard to believe, but unfortunately seems true. This kind of "mislabeling" is actually bodily assault for celiacs, consciously done for profit.
    3 points
  4. Posterboy
    Nacina, Knitty Kitty has given you good advice. But I would say/add find a Fat Soluble B-1 like Benfotiamine for best results. The kind found in most Multivitamins have a very low absorption rate. This article shows how taking a Fat Soluble B-1 can effectively help absorption by 6x to7x times. https://www.naturalmedicinejournal.com/journal...
    2 points
  5. Scott Adams
    I've never been there, but this may be helpful. Here's a concise gluten-free restaurant card in Korean along with its English translation: ---Korean: English Translation: This card should help convey your dietary needs clearly in Korean and English when dining at gluten-free restaurants or explaining your requirements to restaurant...
    2 points
  6. plumbago
    @gameboy68 First, it looks like you do indeed have celiac disease, and a follow up with a gastroenterologist would seem to be in order. Many on these boards will draw your attention to the B12 and D3 levels. While those are important (you may have macrocytic anemia, often caused by low B12), what strikes me is your low sodium level. Your...
    2 points
  7. cristiana
    Back in 2013, prior to diagnosis, I had been quite unwell so my GP ran several blood tests and the tests for coeliac disease just happened to be some of them. I have no idea what my precise numbers were, but the cut-off was 100 for the TTG test and mine was over 100. I remember both my GP and I were delighted when I went to see her as finally we felt we...
    2 points
  8. cristiana
    Good afternoon @Blanco! It's always good to see a British coeliac on the forum. Coeliac UK, the British coeliac charity, is a fabulous organisation (worth joining it just for the gluten-free food guide app, by the way) but the one thing it doesn't have is a forum, so we do get quite a few British people posting here. One of the things that stood...
    2 points
  9. trents
    It typically takes two years or longer for the gut to experience complete healing and regain its efficiency in nutrient absorption. So, you would do well to supplement with gluten free B-complex and magnesium glycinate.
    2 points
  10. Rachel SA
    Thank you so much for your interest and discussion. I really didn’t expect so much care or investment from complete strangers ☺️. I will read through all the links and perhaps its NCGS but I should live like someone with celiac to protect myself from accidental contamination (which kept happening in the past). I am happy to share my blood results and biops...
    2 points
  11. Baba Fats
    That blows my mind. But I also have a friend who I told about the cooking situation, and he said he wouldn’t be able to date someone who he’d have to change so much of his style for. Not starting a relationship makes a little more sense than ending one because of it. But neither actually makes sense to me. If you care about someone, you makes those adjustments, as...
    2 points
  12. Scott Adams
    My mother who also has celiac disease suffered with TMJ for many years before her diagnosis, but her situation did slowly improve after going gluten-free, but it took a decade or so for most of her TMJ symptoms to go away.
    2 points
  13. cristiana
    Thank you for your post, @Nedast, and welcome to the forum. It is interesting to read of your experiences. Although I've not had TMJ, from time to time I have had a bit of mild pain in my jaw, sharp stabbing pains and tingling in my face which appears to have been caused by issues with my trigeminal nerve. I read that sometimes a damaged trigeminal...
    2 points
  14. Maggieinsc
    I get really awful muscle spasms when my magnesium runs low. I take Trace Mineral Drops. I get it from Amazon for a few days and they go away. You can also buy them at Health, Food stores like Whole Foods sprouts. Magnesium pills don’t work like the liquid form which works fairly quickly. It doesn’t take very long for them to come back if I forget to tak...
    2 points
  15. Maggieinsc
    Hope so. And I definitely feel better than i did last fall. I just thought the terrible tiredness and aching all over was part of getting old. And oh the terrible stomach problems. All of those are gone as well as my 25 yrs of horrible “heart burn”. A miracle. Hope not too many effects from a long case of malnutrition which is what celiac gives us all.
    2 points
  16. trents
    Some celiacs claim that they can eat sourdough bread without problems. Others cannot. There is not a scientific consensus behind the sourdough idea yet but we do know the sourdough biochemical process does some altering of the gluten protein. I would be skeptical of that being a go to source for carbs. The thoroughness of the protein alteration may vary tremendously...
    2 points
  17. RicePasta
    I was experiencing similar symptoms after going gluten free and had a hard time pin pointing the issue. After a lot of trial and error with foods I singled out a common ingredient in most gluten free baked goods and a variety of other gluten free items. Tapioca, cassava, and arrowroot. I did some research and found out that these foods are related to the...
    2 points
  18. knitty kitty
    @Blue Roan, How are you doing? I checked on the ingredients of those Aussie Bites. Organic Rolled Oats, Organic Oat Flour, Organic Unsalted Butter, Organic Expeller Pressed Canola Oil, Organic Dried Apricots, Organic Sugar, Organic Cane and Invert Sugar, Organic Raisins, Organic Flax Seeds, Organic Honey, Organic Shredded Coconut, Organic Quinoa...
    2 points
  19. trents

    Isolated DPG-Iga

    So, I contacted Scott Adams, the author of that article and also the creator/admin of this website, and pointed out to him the need to clarify the information in the paragraph in question. He has now updated the paragraph and it is clear that the DGP-IGA does serve the purpose of circumventing the false negatives that IGA deficiencies can generate in the...
    1 point
  20. Beverage
    Sounds like you are in the UK. With blood numbers that high, I thought docs in UK would give an official diagnosis without the biopsy. You should ask about that, so you can get support faster. I'd try to find and print out anything that supports that in your country, get another appointment and take all of it with you. Even in the US now, some docs...
    1 point
  21. knitty kitty

    Not Sure What to Think

    dermatitis herpetiformis that resembles folliculitis is a thing. I've had blisters as well as the follicular type. Any area is susceptible to an outbreak. Keep in mind that dermatitis herpetiformis is pressure sensitive, so avoid wearing elastic waistbands, belts, and tight fitting clothing.
    1 point
  22. DebJ14
    Nobody told me about the high dose Thiamine, but when my husband was injured he was put on it, so I started taking it too. I definitely saw improvement. At this point my biggest concern is my right foot/ankle. Tendon tears have taken a toll. My Achilles did not rupture, but had multiple small tears. I underwent laser and ultrasound therapy to help heal...
    1 point
  23. Scott Adams

    Not Sure What to Think

    If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:
    1 point
  24. trents

    Not Sure What to Think

    Also, be aware of the health damage that can accrue from long term PPI therapy. It raises the PH of the gut and inhibits the breakdown and absorption of nutrients. And you are already anemic. Osteoporosis can also be a result. Oddly enough, we know that in some people, long term PPI therapy can blunt the small bowel villi as does celiac disease. I mention...
    1 point
  25. cristiana
    Hi @Richard1973 and welcome to the forum. I did go through a period of feeling thirsty all the time and my first thoughts went to asking my GP to test me for diabetes. Have you had a test for this condition as if not I think that would be the first thing to rule out? If you were suffering from diabetes, either Type I or Type 2, I've read that...
    1 point
  26. Eldene

    Leaky Gut

    I ordered some herbal remedies (from a Phyto Therapist) to treat my leaky gut/celiac. Will let the Group know if it has worked in 6 weeks. 🙏
    1 point
  27. Jefferson Adams
    Celiac.com 04/09/2024 - Speculation about the source or cause of Napoleon's famous itch is fun, but much of the speculation seems to ignore the facts that point to the most likely answer. Napoleon's autopsy revealed gastric cancer...
    1 point
  28. trents
    1000 mcg of B12 supplementation is peanuts. You should be taking 5000 mcg. and you should be taking a high potency B-complex to boot. The B-vitamins are seldom found in isolated deficiencies but are usually deficient as a group. If you live near a Costco, their Nature Made product line is a good choice and if gluten free will be labeled as such. Most of them...
    1 point
  29. plumbago
    The supplements should work with time on a gluten free diet. I would be concerned about that sodium level. From the other results you posted, the trend seems to be downward. Please do follow up about that. It's not normal to walk around constantly with a sodium of 130. As for diagnosis, you could go back on a full gluten containing diet and blood...
    1 point
  30. Celiac16
    I second this!! I was diagnosed with POTS too and thiamine was a lifesaver along with going low carb (carbs and sugars deplete b1, and diabetics are ubiquitously deficient). It helped my vertigo, nausea, shortness of breath, and tachycardia that had me in and out of the hospital with mild acidosis. I was strict gluten and dairy free for years but continued...
    1 point
  31. Celiac16
    Oh my gosh I am reading my exact story… I just responded to a bunch of problems posts saying the same things… I do pretty much atkins too (under 20g carbs) which has been lifesaving in addition to thiamine. Symptoms are gradually improving, POTS isn’t as bad, and haven’t had the vertigo or nausea I had every time I ate. I think blood sugar may have be...
    1 point
  32. Celiac16
    i am trying a low carb (20g or less) diet (high fat and protein) and i feel a lot better. I was also getting nausea and dizziness after eating before and I don’t with the diet.
    1 point
  33. cristiana
    Hello @brian1 I'm a UK based Moderator here on the forum. If you are British, you may find that in your region you might be able to get certain gluten-free food (usually staples like bread) on prescription. I recommend you ring Coeliac UK for the most up-to-date advice on this. https://www.coeliac.org.uk/home/ There is some advice here for...
    1 point
  34. knitty kitty
    @brian1, welcome to the forum Sorry to hear you're not feeling better. Improving one's vitamin levels are so important. I use Thiamine, Pyridoxine B6, and Cobalamine B12 for pain relief in addition to a B Complex supplement. This combination really works for my pain. Keep us posted on your progress! Here's some articles you might...
    1 point
  35. Rogol72

    1540 TTG Results... Help!

    Hi @Blanco, I think you should contact this dietitian ... https://www.bda.uk.com/find-a-dietitian/cristian-costas-batlle-london-united-kingdom-12490.html Specialising in Coeliac Disease, he may be able to assist you in pushing for an official diagnosis without the need for a biopsy. He knows everything about the diagnosis process in the NHS...
    1 point
  36. Scott Adams
    Celiac.com 04/13/2024 - In recent legal proceedings, a Biden-appointed judge made a significant decision that could impact the way prisoners receive medical care, particularly concerning dietary needs. The case in question, Phoenix v Amonette...
    1 point
  37. Heather E
    My 16 year old daughter has Celiac and had an incredible experience on our family safari. I was nervous about traveling so far from our gluten free staples. I researched this trip over a few years and a few tour companies. We finally felt comfortable. We were amazed that our tour guide and the lodges he picked were so knowledgeable. They knew proper food...
    1 point
  38. Mari

    Diarrhea vs Constipation

    Hi Goatmanvivo, When I worked in medical labs we would examine fecal samples routinely noting the color, consistency and whether there was any blood or undigested food observed. Fresh blood as you described was noted as was an occult blood test reported. Fresh blood is usually from the large intestine and older (occult) blood is an indication that the...
    1 point
  39. Beverage

    Waffle Maker

    Clean well as others have said, use a toothbrush or brush of some kind to clean out all corners, edges, valleys, etc. After all that cleaning, I would also make a batch of gluten free waffle mix and make a bunch of waffles and throw them out, don't eat those. Perhaps that will help pick up any remaining stuck on or hard to get stuff. I did this with one...
    1 point
  40. Rosecottage
    I found that what worked best for me was replacing the gluten ingredients or just removing gluten from the same plate. Most of the time you can just switch up the starch by adding a baked or roasted potato instead of a bun, pasta instead of buttered bread (tuna salad instead of a tuna sandwich), or using rice as a base. Gluten is fat-soluble. I...
    1 point
  41. MaryH
    Thank you, the Walmarts around here only carry "shelf items" not refrigerated/freezer items. I checked their website but again no refrigeration or freezer items. I appreciate your response, it was worth a look.
    1 point
  42. Blue Roan
    @knitty kitty That’s good to know! My zinc levels were normal, but I’ve been making more of an effort recently to eat more leafy greens so maybe the zinc in them will help. Thank you!
    1 point
  43. lydialoo
    Hey @Scott Adams. For me they Just retested my bloods. My doctor did say they may repeat biopsy in the future if necessary (as some symptoms from POTs can be similar to celiac symptoms she just wants to be 100% on what's happening). My bloods came back amazingly improved though and I have no vitamin deficiencies or anything so that's really good news...
    1 point
  44. Linedancegal
    Hello Crystal, We actually got the pizzas from Pat's Pizza in Cinnaminson. And yes, you are correct, there is a definitely a difference. I totally forgot that he also had pizza, so I didn't think twice about grabbing the pizza box and just eating it. I knew that something was different (maybe the fact that it tasted good, should have been a good clue?! lol...
    1 point
  45. Wheatwacked
    Absolutely agree. The US diet as recommended is very high omega 6. Sweet potatoes are 17:1 while russet potatoes are only 3:1. Wheat flour is a wopping 22:1. Optimal is 1:1. No wonder we all hurt. New insights into erythropoiesis: the roles of folate, vitamin B12, and iron That is normal. In Michigan you get very little UV...
    1 point
  46. JustGemi
    Scott, Can you look at my post and tell me if my numbers are off the chart!? I won't be able to see my Gastro for another 7 weeks and I am freaking out at the numbers. JustGemi
    1 point
  47. HayleyC123
    Yes, thank you! We are awaiting results of his celiac test now, but checking in on the rash potentially being dermatitis herpetiformis or something else. I tried posting pics and reposting in general like was suggested above, but I don’t have the option to post photos, only links. I want to avoid a biopsy because he is 3.5 and already scared of the doctor. ...
    1 point
  48. Scott Adams
    I somehow missed the recipe in the cut and paste...just added it!
    1 point
  49. trents
    Welcome to the forum, @Soleihey! Undoubtedly, you are experiencing vitamin and mineral deficiencies. Superficial serological vitamin and mineral deficiency testing often does not tell the whole story as it only measures what's floating around in the blood, not what is actually getting into the tissues and being used by them. There are more in depth tests...
    1 point
  50. Jefferson Adams
    Celiac.com 03/08/2024 - Another gluten-free beef stew recipe? Oh heck yes! We love a good gluten-free beef stew recipe, almost as much as we love making beef stew at home. We'll try pretty much any version we can and compare notes. The...
    1 point
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    • trents
      You have three celiac disease specific antibody tests that are positive: Endomysial  Antibody IGA (aka, EMA), tTG-IGA, and tTG_IGG. Furthermore, your Immunoglobulin A at 55 is low, meaning you are IGA deficient. This one is not an antibody test for celaic disease per se but a measure of "total IGA" levels and if low (yours is low) it can suppress the individual antibody scores and even cause false negatives. So, yes, it definitely looks like you have celiac disease.   Do not yet begin a gluten free diet as your physician may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining for confirmation of the antibody testing. This may help:   
    • Bayb
      Hi, I received my labs via email yesterday and have not heard back from my doctor yet. Can anyone tell me if these results indicate I have Celiac?      Endomysial Antibody IgAPositive  Ft-Transglutaminase (tTG) IgA6  H0-3 (U/mL) - Negative 0 - 3 - Weak Positive 4 - 10 - Positive >10 - Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten-sensitive enteropathy. FImmunoglobulin A, Qn, Serum55  L87-352 (mg/dL) Ft-Transglutaminase (tTG) IgG183  H0-5 (U/mL) - Negative 0 - 5 - Weak Positive 6 - 9 - Positive >9
    • Aussienae
      Mine is definitely triggered by inflammation and stress! I do also have arthritis in my spine, but the pain is more in my pelvic area. Im sure i have other food intolerances or other autoimmune isues but the more I focus on it and see doctor after doctor, it just gets worse.  Best thing is get of Gluten! (I also avoid lactose). Try to limit stress and anything that causes inflammation in your body.
    • ButWhatCanIEat
      Good morning,   I got an email about replies to this post. Some of my doctors had blamed a slipped disc for the pain I had and that contributes, but after meeting with a gastroenterologist AGAIN and trying some lifestyle modifications, I found out I have IBS and can't tolerate corn or excessive fructose to any degree. Cutting out corn AFTER having cut out all gluten containing products was a real pain but I feel much better now!
    • trents
      So, I contacted Scott Adams, the author of that article and also the creator/admin of this website, and pointed out to him the need to clarify the information in the paragraph in question. He has now updated the paragraph and it is clear that the DGP-IGA does serve the purpose of circumventing the false negatives that IGA deficiencies can generate in the tTG-IGA antibody test.
    • knitty kitty
      Here's a link... Thiamine Deficiency Causes Intracellular Potassium Wasting https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/
    • Soleihey
      Has anyone experimenced enlarged lymph nodes with celiac? Both in the neck and groin area. Imaging of both areas have said that lymph nodes are reactive in nature. However, they have been present for months and just wondering how long this may take to go down. Been gluten-free for about two months. Blood counts are normal.
    • Kmd2024
      Hmm interesting I just assumed that any “IGA” tests including the DPG iga would be negative in a person who is IGA deficient but maybe that is not the case for the DPG test.
    • Scott Adams
      If you were just diagnosed I can say that if you go 100% gluten-free should should see dramatic improvement of your symptoms over the next few months, but the hard part is to stay gluten-free. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • trents
      From the article I linked above: DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide) Blood Tests for Celiac Disease These tests measure the levels of antibodies in the blood, but specifically targets deamidated gliadin peptides, which are a type of gluten protein that can trigger an immune response in people with celiac disease. The test is not always included in adults, but should be in cases with IgA deficiency.  I'm not sure if this is a grammatical error or not but in the context, two tests are being spoken of together so it could be intended to say, "These tests". I'll ask Scott about that.
    • Kmd2024
      No they did not run a total IGA. But wouldn’t the DPG-IGA also be negative also if I was IGA deficient? They did also run a TTG-IGG and a DPG-IGG and they were also negative.
    • trents
      The DGP-IGA is valuable when celiac is suspected but the person being tested is IGA deficient. Were you tested for IGA deficiency. In other words, was there a test known as "Total IGA" ordered? Here is an overview of the various blood tests that can be run when diagnosing celiac disease:   
    • Kmd2024
      Has anyone ever negative blood work except for the DPG-IGA? Mine was 42 (reference range negative is >20. The TTG iga was negative. I have always suffered from bad gas issues and lately have been having bouts of diarrhea and constipation. I also have a bumpy rash that comes and goes below both elbows. i have an endoscopy scheduled in May but I was just wondering if anyone else had bloodwork like this and what was the end result?
    • trents
      Welcome to he forum community, @DjinnDjab! You wrote: "i just found out i may have celiac. so needless to say i no longer have friends or relationships." Are you saying that the need to eat gluten free has resulted in losing all your friends and your entire social life?
    • DjinnDjab
      i am a 37 yo male and this describes me perfectly. on a scale of 1-10, i am at 8. 9. 10, 11 for 8-12 hours a day, 6-7 days a week. this has been going on for about 5 years and i just found out i may have celiac. so needless to say i no longer have friends or relationships so i spend a lot of time with myself. and uhhh what really sucks is uhh, sorry to say, "enjoying myself" is a trigger for this pain. i can be fine all day until i take 5 mins to "myself" and then its all downhill from there. this has robbed me of every.single.thing in my once colorful life. 
    • cristiana
      This might be helpful - from Coeliac UK.   https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/#:~:text=Usually%2C a biopsy of the,more about diagnosis of children.
    • Scott Adams
      Yes, wheat is common in most soy sauces now because it speeds up the fermenting process.
    • JoeBlow
      For 16 years I have relied on the website glutenfreedrugs.com to determine if a pharmaceutical is gluten-free. The website has been down for at least a week. Does anyone have any information about this outage, the status of the website founder and maintainer pharmacist Steven A. Plogsted or a phone number? I did not get a response for my email to glutenfreedrugs@gmail.com in October of 2022. Steven did respond to my emails in 2012. Thanks.
    • Beverage
      Sounds like you are in the UK. With blood numbers that high, I thought docs in UK would give an official diagnosis without the biopsy. You should ask about that, so you can get support faster.  I'd try to find and print out anything that supports that in your country, get another appointment and take all of it with you. Even in the US now, some docs are doing this, my 19 year old step granddaughter got an official diagnosis here in US with just blood results a few months ago.
    • Beverage
      Is soy sauce in Korea also made from wheat like it usually is in US? I'd be concerned that even if asking about gluten, they would not be aware of or think of some like that. 
    • trents
      That's a good idea. It can at least establish the potential for developing celiac disease and can help people decided between a celiac diagnosis and NCGS (Non Celiac Gluten Sensitivity). And it doesn't require a gluten challenge and can be had without a doctor's prescription.
    • awright24
      I have my endoscopy on Thursday, has anyone had the procedure done with a cough? I don't have a continuous cough, but every now and then throughout the day I have sort of coughing episodes. They are a lot better than they were but I called endoscopy and they said to speak to my gp and my gp got back to me and said I need to ask endoscopy if its ok if I have it done still.  Help!
    • MMH13
      Thank you so much, everyone. For the moment my doctor just has me taking iron but hopefully we can reconnect soon. I'm going to look into genetic testing, too. Great advice all around and I appreciate it--and you can bet I'm going off the PPIs!
    • Eldene
      I walk fast for fitness, 4 to 6 km per day. I am also 74 years old. Apart from the Celiac challenge, my lifestyle is healthy. I had a sciatiac nerve pinching under my one foot, with inflamation in my whole shin. It was almost cured, when the other shin started paining and burning. I do stretches, use a natural cooling gel and rest my feet. Can Celiac cause muscle pains/inflamation, or is it just over-excercising?
    • LovintheGFlife
      I recently started shopping at a nearby Trader Joe's store. I was surprised at the number and variety of (healthy) gluten-free options sold there. I must admit their low prices are also quite tempting. However, I am curious as to the labeling on all their packages. While none of their products are certified as gluten-free, many are identified as 'GLUTEN FREE' on the packaging. Are these items safe for celiacs? Has anyone tried Trader Joe's products and have there been any adverse reactions?
    • Beverley Ann Johnson
      HI, my doctor suggested one week of consuming gluten before blood tests.  I have been gluten free for 3 years.  Has anyone been through this and will I get exact results after one week of consuming gluten?  I don't even know if I can do this, if I get sick I am not sure if I can continue, any suggestions??  Thanks in advance.  
    • Denise I
      I did reach out to them on April 4th and left a message. I will try calling again. Thank you!
    • trents
      PPI's can be a wonderful healing agent when used as prescribed on the label which I believe recommends use of up to 8 weeks. But they are like antibiotics in that they are overprescribed and undermonitored. Docs generally prescribe them and then keep prescribing them because they take care of immediate symptoms so well. Physicians are more into treating symptoms than uncovering causes.
    • Scott Adams
      For the vast majority of celiacs it's probably safe, however, it seems that for those who are super sensitive it's best to avoid such products. It's fairly easy now to find brands that are naturally gluten-free, which is what Celiac.com recommends.  You might finds this article interesting:  
    • Scott Adams
      This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Have you tried calling the Celiac Disease Foundation about this? Their number is 844-593-8169.
    • Scott Adams
      Only the manufacturer would know if it's gluten-free, so if it says free of gluten, then it is likely safe. This company makes a gluten-free line of cosmetics, and has been a sponsor here before: https://www.epilynx.com/  
    • knitty kitty
      @Richard1973, welcome to the forum!  @cristiana is on the right track, stay hydrated.  Also have your potassium level checked.  Low potassium causes dry skin and dehydration.   We need Thiamine B1 to keep our potassium level correct.  Without sufficient thiamine, we lose potassium and our skin loses moisture.   Ask your doctor about supplementing with vitamins and minerals.  The Gluten free diet can be lacking in the eight essential B vitamins, Omega Threes and minerals.  
    • knitty kitty
      I'd like to hear more about the supplements recommended!
    • knitty kitty
      Good for your doctor to be wondering about it!  She's on the right track.   Anemia, diabetes and thiamine deficiency can cause seronegative results.   Unfortunately, if you go gluten free, your intestines will start healing and damage due to Celiac might not be apparent.  But, on the other hand, PPI's cause intestinal damage, too, so they might attribute the intestinal damage to the PPI's and miss Celiac Disease.   PPI's are bad news.  I do hope you can get off them.   A genetic test for Celiac does not require eating gluten.   Until a new way to diagnose Celiac without having to consume gluten is invented, we're between a rock and a hard place.   Sending encouragement!
    • DebJ14
      YES!  I had the Spectracell test for micronutrients and take targeted supplements in specific doses as recommended by our Board Certified Nutritionist.
    • knitty kitty
      Acid reflux is not an overproduction of stomach acid, it's underproduction of stomach acid.   We need Niacin B 3 and Thiamine B1 to make and secrete stomach acid and digestive enzymes.   Deficiencies in several of the eight B vitamins can present with gastrointestinal symptoms.  Thiamine deficiency can cause Gastrointestinal Beriberi.  Niacin and Cobalamine deficiencies can cause digestive upsets.   Ask your doctor about supplementing with the eight essential B vitamins and magnesium.  
    • MMH13
      All I've had is one of those blood tests where they test for all sorts of things. The results said I had an iron deficiency but while it came back negative for Celiac's the doctor said she was still "wondering" about it. I haven't spoken with her since (huge backlog with the NHS here in England at the moment). Thus, I don't really know where we're going from here. I'm just sort of reaching out because I'm frustrated. I appreciate how open you've all been.
    • knitty kitty
      Yes, I understand.   I get outbreaks on my legs if I wear leggings.  I switched to flannel, nice and soft.  Do ask your doctor about supplementing with B vitamins.  Niacin B3 helps the dermatitis herpetiformis spots heal.   Have you asked about a genetic test?  You have to have specific genes for Celiac Disease to develop.  
    • knitty kitty
      Omega Threes, Vitamins A, D, E, Biotin B7, and Pantothenic Acid B5 are helpful in healing tendons.   I'm so glad to hear of your improvement with high dose Thiamine.   Are you taking a B Complex and magnesium as well?
    • MMH13
      Thank you for sharing that about your dermatitis herpetiformis, it's really useful information. I'm particularly interested by what you said about pressure sensitivity; I suspected that the winter leggings I was wearing contributed to the problem and switched to looser clothing. I've also noticed the thing about elastic waistbands, as that's the area I'm having problems with it spreading now. I will be relieved when I get a definitive answer/diagnosis.
    • knitty kitty
      dermatitis herpetiformis that resembles folliculitis is a thing.  I've had blisters as well as the follicular type.   Any area is susceptible to an outbreak.  Keep in mind that dermatitis herpetiformis is pressure sensitive, so avoid wearing elastic waistbands, belts, and tight fitting clothing.  
    • knitty kitty
      Removing dairy from my diet significantly improved my dermatitis herpetiformis.  My skin and itch cleared rapidly afterwards.  I suggest you try removing dairy and see if it makes a difference.   Taking the flushing kind of Niacin, Nicotinic Acid (not related to nicotine in cigarettes), sounds counterintuitive because of the flushing, but it really helps.   Selenium, Pyridoxine B6, and Riboflavin B 2 interact with iodine to make thyroid hormones.  Adding more of these nutrients would allow a different way for iodine to be taken out of circulation.   Vitamin C, Biotin B 7, Vitamin A, and Vitamin D are important to skin health, as are Omega Threes.   Thiamine B1, Pyridoxine B6, and Cobalamine B12 together have an analgesic effect.   Neuropathy caused by vitamin deficiencies can feel like intense itching and burning.  Deficiencies in any of these B vitamins, Thiamine, Niacin, Pyridoxine, and Cobalamine, can present with neuropathy.
    • ItchyHell
      Thanks for the replies. I stay away from gluten like it's the plague. Yet time to time I get dermatitis herpetiformis attacks, somehow. Yes, I tried 2 different antihistamines given by a doctor. They gave me the worst itch of my life. Only 2–3 hours of terrible sleep a day for 4–5 days because of the burning itchy hell, nothing helped! I am scared of taking niacin, I am pretty red and itchy already I will stop iodized salt, even though I don't think it's a trigger for me. Dairy is my daily main source of calcium, and I don't think that also triggers my version of dermatitis herpetiformis. I am looking for an FDA approved pill that both numbs the burning kinda pain and stops itching for a day without serious side effects when used long term as I said not for more home remedies, lotions. I tried so many of those, only wet wrap therapy works for me. There has to be some pill that moderate burn patients use, right?
    • MMH13
      I'm wondering, is it likely to be dermatitis herpetiformis if I don't have the blistering? Also, my rashes are on my arms, hips, calf, and stomach, which doesn't seem the usual areas?
    • MMH13
      Thank you, everyone, I'm going to read those articles--and I feel more determined than ever to get off the omeprazole!
    • DebJ14
      Nobody told me about the high dose Thiamine, but when my husband was injured he was put on it, so I started taking it too.  I definitely saw improvement.  At this point my biggest concern is my right foot/ankle.  Tendon tears have taken a toll.  My Achilles did not rupture, but had multiple small tears.  I underwent laser and ultrasound therapy to help heal it, but it remains perpetually swollen.  I had a CT scan done a couple years after the worst of it and I was diagnosed with chronic impingement syndrome.
    • Nicola flaherty
      Hi I have tried to come off of the omeprazole for many years with other medication and diet changes but never able to.  I have had so many tests but up until now never tried a gluten free diet.this has been the only diet that has ever helped.  still several tests to have. 
    • knitty kitty
      Welcome to the forum, @Nicola flaherty, Proton pump inhibitors like omeprazole results in negative blood tests for Celiac Disease.   The Impact of Acid Suppression Medications and Non-steroidal Anti-Inflammatory Drugs on Clinical and Histologic Features in Celiac Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511753/ Talk to your doctor about getting off the omeprazole.  
    • knitty kitty
      Welcome to the forum, @MMH13, Yes, @trents and @Scott Adams have good advice.   Do try to get off the ppi, omeprazole.   This study found that people with Celiac taking PPI's like omeprazole are seronegative.    The Impact of Acid Suppression Medications and Non-steroidal Anti-Inflammatory Drugs on Clinical and Histologic Features in Celiac Disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511753/ Anemia can affect not only the production of red blood cells, but also white blood cells, like those that make anti gluten antibodies.   Hope this helps!
    • Scott Adams
      Welcome the forum. In order to screen for celiac disease you would need to be eating gluten daily, a lot of it (usually they recommend at least 2 slices of wheat bread daily) for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:     PS - Taking PPI's for that many years is also not recommended now because it can lead to other health issues.
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:  
    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful:  
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