Leaderboard

Hi Scott, yes I have had symptoms for years and this is the second GI I have seen and he could not believe I have never been tested. He called later today and I am scheduled for an endoscopy. Is there a way to tell how severe my potential celiac is from the results above? What are the chances I will have the biopsy and come back negative and we have to keep searching for a cause? 

I agree christina, there is definitely many contributing factors! I have the pain today, my pelvis, hips and thighs ache! No idea why. But i have been sitting at work for 3 days so im thinking its my back. This disease is very mysterious (and frustrating) but not always to blame for every pain. 

"her stool study showed she had extreme reactions to everything achievement on it long course of microbials to treat that." The wording of this part of the sentence does not make any sense at all. I don't mean to insult you, but is English your first language? This part of the sentence sounds like it was generated by translation software.

What kind of stool test was done? Can you be more specific? 

Perhaps I should also have said that in addition to showing a very high response to gluten, her stool study showed that she had extreme reactions to everything achievement on it long course of microbials to treat that.

My daughter has celiac disease and has had for a long time. She fell loses strictly gluten-free diet and recently got rid of all cutting boards in any gluten in her house at all. She just had a stool test and it came back showing of gigantic response to gluten in her diet. What could be going on since she doesn't eat any gluten and is very careful about any kind of hidden glue? Help!

I think sometimes the pain described here can be a result of a sort of 'perfect storm' of contributing factors.  Recently I had an appalling bout of lower back pain, lower burning gut pain and what felt like cramps.  I then started to think about what could have caused it and I realised it was several things that had set it off: I'd been carrying heavy luggage (back strain); I had been sitting down in a car for too long and wearing a tight belt (I have pudendal nerve issues and sacroiliac issues and this exacerbates the pain), and I had bloating and burning pain in my colon caused by eating too much soy, latte and caffeine, I guess putting further pressure in the lower abdomen.  I had this same pain prior to my diagnosis and a couple of years post-diagnosis, I'd quite forgotten how unpleasant it was. 

HI @Kirbyqueen That's great news your insurance will be kicking in soon.  Sorry to see that you have been dealing with this for six months now, but I do hope you have managed to find some relief with some of the suggestions in the meantime. Perhaps come back and let us know what the doctor says. Cristiana

I agree, and hopefully your doctor will contact you soon about the next step, which will likely be an endoscopy to confirm your diagnosis. Do you have celiac disease symptoms? 

Still dealing with this rash on my legs. I've eliminated ringworm (through use of topical ointments). And I also know it's not shingles, as I've never had chickenpox before and I'm still fairly young. Through a lot of online research, I'm leaning more towards dermatitis herpetiformis, eczema, or psoriasis. I've actually got a doctor's appointment in May (finally got some insurance) and I'm going to bring it up then. I'm feeling really hopeful and excited to maybe be getting some relief soon.   Big thanks to everyone for the suggestions and positive thoughts!

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:   

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

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.

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!

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.

Here's a link... Thiamine Deficiency Causes Intracellular Potassium Wasting https://www.hormonesmatter.com/thiamine-deficiency-causes-intracellular-potassium-wasting/

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.

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.

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.):    

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.

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.

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:   

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?

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.