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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?

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. 

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.

Yes, wheat is common in most soy sauces now because it speeds up the fermenting process.

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.

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.

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. 

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.

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!

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!

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?

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?

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.  

I did reach out to them on April 4th and left a message. I will try calling again. Thank you!

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.

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:  

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.):    

Have you tried calling the Celiac Disease Foundation about this? Their number is 844-593-8169.

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/  

@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.  

I'd like to hear more about the supplements recommended!

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!

YES!  I had the Spectracell test for micronutrients and take targeted supplements in specific doses as recommended by our Board Certified Nutritionist.

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.  

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.

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.  

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?

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.

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.  

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.

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?

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?

Thank you, everyone, I'm going to read those articles--and I feel more determined than ever to get off the omeprazole!

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.

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. 

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.  

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!

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.

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:  

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:  

Welcome to the forum, @ItchyHell, Have you tried antihistamines?   Niacin Vitamin B 3 helps.  I use Vintage Traditions Tallow Balm which is absorbed into the skin and calms my dermatitis herpetiformis down.   I'm concerned about your dermatitis herpetiformis being widespread and frequent.  Are you getting gluten in your diet?   Eliminating foods high in Iodine will help.  High iodide foods include dairy products and crustaceans and other seafood including seaweed.   Switch to Pink Himalayan salt, instead of Iodized Salt.   Hope this helps!

Hi everyone.  I have been very unwelll for several years with what was diagnosed as ibs and acid reflux so have been on omeprazole and buscopan for over 8 years.  In December I became very ill with swollen lymph nodes and lump in my neck and have been unwell ever since.  I have lost a stone in weight and have been for a ct scan which showed severe intestinal inflammation.  I have been tested for celiac 6 times and always come back negative. But have decided for the past 3 weeks to go gluten free and I feel like a different person.  I am having a colonoscopy next week and biopsies done but unsure if it would show celiac?  Sorry that everyone has been so unwell in chats but it’s interesting to see how many have had symptoms the same as me. I was starting to think I was the only one with strange symptoms that no one can find out what’s wrong. 

@DebJ14, Dr. Derek Lonsdale and Dr. Chandler Marrs have done research on fluoroquinones and how they induce Thiamine deficiency.  High dose Thiamine is used to treat being floxxed.   Thiamine also helps UTIs. References: A Fluoroquinolone Reaction After Just One Pill https://www.hormonesmatter.com/fluoroquinolone-reaction-one-pill-cipro/ Who Was I to Question a Doctor? Lessons Learned after Being Floxed https://www.hormonesmatter.com/question-doctor-lessons-learned-floxed-cipro/

Hi, @Katanya, How are you doing?  I hope you're feeling better.  Did you decide to do a gluten challenge?  You could have an endoscopy and biopsy without a gluten challenge.  This would give a baseline with which to compare future endoscopies.  I believe a positive blood test for anti gluten antibodies is a positive for Celiac Disease.  In the early stages of celiac disease, there's little intestinal damage. From what I've read, it's normal for enzymes like ALP to run high with exposure to gluten, but they return to normal after resuming a gluten free diet.  If they remain high, then checking for osteopenia is a good idea.   Do talk to your doctor and nutritionist about supplementing with vitamins and minerals.  Checking for nutritional deficiencies is important because the gluten free diet can be low in some vitamins and minerals, especially if the gluten free diet has been followed for many years.  Checking for nutritional deficiencies should be done before starting supplementation.  You will get false results if you are already taking vitamins.  Vitamins from food and supplements are absorbed in the intestines and circulate throughout the body in the bloodstream before being absorbed into tissues and organs.  Vitamin supplements will make the tests results falsely elevated, thus hiding a deficiency.  Be sure not to take supplements for eight to twelve weeks before testing.  Check with your doctor. But, on the other hand, blood tests don't accurately measure the amount of vitamins stored inside cells in organs and tissues where they are utilized.  The body will scavenge vitamins stored inside cells in other organs in order to supply the brain and heart with the needed vitamins.  You can have a functional vitamin deficiency before there are any changes in blood levels.   Me?  I started supplementing because my doctors were clueless about Celiac.  Taking all eight essential B vitamins in addition to high dose Thiamine and magnesium is important.  Thiamine needs magnesium to make essential enzymes.  Thiamine interacts with all the other B vitamins.  Thiamine also interacts with ALP.  ALP actually helps the absorption of Thiamine.  The B vitamins are nontoxic and water soluble, so any not absorbed is easily excreted in urine.   There's four fat soluble vitamins, A, D, E, and K.  Vitamin D regulates the immune system and can reduce inflammation which will help ALP go down.  And Vitamin C helps reduce inflammation, too. Yes, Thiamine will help with POTS.  I was amazed how much better I felt after high dose Thiamine.  There's no harm in trying.   References: Liver abnormalities associated with celiac sprue. How common are they, what is their significance, and what do we do about them? https://pubmed.ncbi.nlm.nih.gov/7665816/ Serum alkaline phosphatase in adult coeliac disease https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1552906/ Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/ Nutritional Imbalances in Adult Celiac Patients Following a Gluten-Free Diet https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8398893/ Micronutrient deficiencies are frequent in adult patients with and without celiac disease on a gluten-free diet, regardless of duration and adherence to the diet https://pubmed.ncbi.nlm.nih.gov/36096056/ High Dose Thiamine https://www.hormonesmatter.com/refeeding-syndrome-thiamine-deficiency/ The importance of thiamine (vitamin B1) in humans https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10568373/ High-dose vitamin B1 therapy prevents the development of experimental fatty liver driven by overnutrition https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7988776/

I'm not aware of having a hiatal hernia; I've only heard of them recently because my mother-in-law has one. I've recently given up coffee in my bid to get off of Omeprazole, and have contented myself with tea and ginger tea. The ginger tea in particular helps me quite a lot.

I too have had horrible joint pain and swelling as well as chronic tendinitis.  A good diagnostician reviewed all my medical records and realized that it all started back in 1987 after a course of Cipro for a sinus infection.  He also linked subsequent severe flare ups in my ankle, shoulder, and elbow to repeat prescriptions.  I was floxxed!  My poor husband ended up in the ER getting morphine after taking 2 pills of Levaquin for a UTI.  He was unable to walk for months.  Thankfully, the orthopedic surgeon he saw a few days after the ER visit picked right up on it while reviewing his history.  The fluoroquinones are supposed to be last resort, but sadly many doctors hand them out like candy without trying other, less toxic, antibiotics.

If you are a coffee drinker, another thing the helped me with conquering the reflux was switching to using low acid coffee. There are many different brands but the one I use is Folgers "Simply Smooth." Do you have a hiatal hernia? I have one and it exacerbates the reflux disease because it prevents the esophageal sphincter from closing completely.

This is concerning.  Not only do you have a higher risk of miscarriage, but you also have a much higher chance of having a low birth weight baby.  If you are not absorbing nutrition because of celiac disease, then neither is your baby.  And, if you continue down this path your breast milk may not be as nutritious as it should be either. I had 2 miscarriages and 2 low birthweight babies that continued to struggle to thrive.  Imagine a 2 year old weighing only 19 pounds!  They were always the shortest and scrawniest kids in their class.  Unfortunately, I was not diagnosed until I was 54 and my sons were 25 and 29 at the time, so it was too late for them to reach their full height. My daughter in law is also celiac.  My grandsons were both low birthweight babies.  She was diagnosed when the oldest was almost 3.  He grew and inch and gained 6 pounds the first month she was gluten-free.  The youngest was 7 months when she was diagnosed.  The youngest one towers over both his parents and older brother.  

Thank you so much for that advice, I will try the apple cider vinegar. It really feels like it's well past time to be done with the omeprazole (generic name of the drug here in the UK). I think I will also go back to eating gluten in case they decide to test again. You've been so helpful, I appreciate it!

I had setbacks as well when trying to kick the PPI dependency. Took me about a year and a half to fell like I had largely succeeded. I found that using TUMS when I had spot flareups of reflux helped me get past the bumps in the road. Oddly enough, one thing that seemed to help the most was apple sider vinegar. I put a tablespoon of apple cider vinegar in about 6 oz of water and drink it right breakfast every morning. Since doing that the past several months, it seems to have put the coup de gras to my reflux.

No, you're absolutely right. I've been trying to wean myself off of the PPI drugs and am now to the point where I take 10 mg every other day. I tried to go off them once before and was down to 1 every 3 days but then had a setback and gave up for a while. This time I'm determined. I've come to realize it's entirely possible that the PPI therapy led to my anemia, which caused my rashes. It would just be nice to have a definitive answer.

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 this because it is a drug that was never intended for long term use but physicians tend to put people on them and then forget about it because they are so effective in addressing immediate symptoms like acid reflux. And it is so easy to become dependent on PPIs and it can be difficult to wean yourself off of them after having taken them for a long time. I know. I have personally been through this cycle.

Thank you for your reply! Unfortunately I don't know which test was run--they were testing for several things, I think, I wasn't really told much. I've been reading posts on the forum and I saw that not eating gluten will invalidate future tests; I guess I was just desperate to do something about the rashes. It appears I may have to just keep on keeping on, though, in the event that they do test again. Quite frustrating!