-
Celiac.com Sponsor (A1):
Celiac.com Sponsor (A1-M):
-
Get Celiac.com Updates:Support Our Content
Leaderboard
Popular Content
Showing content with the highest reputation since 07/30/2024 in all areas
-
Welcome to the forum, @Marie70! The first thing to know is that celiac disease has a genetic base. The two main genes that have been identified as providing the potential to develop celiac disease are HLA-DQ2 and HLA-DQ8. About 40% of the general population carries one or both of these genes. However, only about 1% of the general population ever develops...5 points
-
Supplements for those Diagnosed with Celiac Disease
Zuma888 and 3 others reacted to Scott Adams for a topic
I am often asked about which supplements I take, so I'm sharing it here. I think you'll find a big variation of what supplements different people on this forum take, but here is a breakdown of the many I take. This regimen has worked well for me, but it has take many years for me to add and remove different ones. Also, all of this list may not apply...4 points -
Lectins are carbohydrate storage proteins. Different plants have different lectins. Gluten is a lectin, but not all lectins are gluten. Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it. During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes. In...4 points
-
Key word, "gluten-like". By the way, have you looked up Dr. Osborne's credentials and his background? He is a licensed nutritionist but his scientific? medical? clinical background is that of a chiropractor. He is not taken seriously by many experts in the medical and scientific community. If it is helpful to you to see these other cereal grain...4 points
-
@Bebygirl01, if you want to play word games with the term, "gluten", we can do that. The proteins you list in these other cereal grains besides wheat, barley and rye are somewhat different from that found in wheat, barley and rye and, technically speaking, are not "gluten". Technically speaking, "gluten" should only be applied to a particular protein found...4 points
-
Personally, I would get a new GP. Advice to continue eating gluten, even after a Celiac disgnosis, is ridiculous. Clearly the GP knows nothing about the disease. That advice could be dangerous to your health. I too found out by accident. I was searching for help with ulnar neuropathy. The first doctor took xrays of my elbow and hand. Surprise, surprise...3 points
-
Could you be having acid reflux? I used to get it soooo bad before I was diagnosed, now very rarely. I didnt have stomach upset, aka silent reflux, but pain in chest (thought I was having a heart attack) and food would get stuck from the esophagus irritation. The things here really helped, especially raising head of bed, sip of apple cider vinegar before...3 points
-
Hi Mags, I was diagnosed almost 4 years ago at 57y.o, also of Irish heritage, my mom's from Co. Galway. Have your doctors run an immune globulin panel. My IgA was undetectable & that is what the usual bloodwork for celiac relies on. For example, my tTG IgA was below 2 & deamidated Gliadin IgA was 5, both in normal range. In other words, you do not...3 points
-
confirmed via biopsy, quite depressed
knitty kitty and 2 others reacted to cristiana for a topic
We've definitely all had such thoughts. But as Scott says, it does get easier with time. I'm not sure where you are posting from but in England where I live, over the last ten years or so most things I missed at first now have gluten free substitutes. I still miss Twix bars, and chocolate Penguins (a type of biscuit) but I'm hoping sooner or later someone...3 points -
4 Years and very little progress
knitty kitty and 2 others reacted to cristiana for a topic
Hello there @maylynn I'm a slow healer from the UK. I sympathise. Despite three endoscopies which showed nothing wrong, I frequently suffered from a very sore stomach, bloating, feeling queasy. For some time I was taking the wrong iron supplement (Floradix instead of Floravital - the former has gluten in it, but the latter none). But...3 points -
Welcome to the forum, @Redlima! Not sure if this could relate to your issue but it is well-known by the celiac community that gluten has an opiate-like effect that causes some people to experience withdrawal symptoms upon going gluten free. This usually manifests itself within the first few weeks. So, I'm not sure that fits with your time frame. Also...3 points
-
I went to France about five years after my diagnosis and at that time found I was reacting a lot to food that made no mention of gluten in the ingredients, and my antibodies were raised after my visit as I had my annual review just after the trip. I felt that food labelling wasn't as reliable as the UK, and cross contamination a more marked problem...3 points
-
I went through issues with oats when first diagnosed. I thought I couldn't eat any oats at all, even certified gluten-free. Then I learned about purity protocol oats. The list here has gotten smaller through the years, so I check it every time I order. I had been ordering one brand on the list that was later found to contain lower levels of gluten. I...3 points
-
I’m terrified it’s too late for me😭
knitty kitty and 2 others reacted to NavyMom for a topic
Hi CathiJean, Wipe those tears my friend. Finding out that you have celiac just gave you the cheat code on how to start feeling better! It may feel like a loss right now, but honestly within 6 months you will start feeling better. Within a year you will look back and wonder how in the world did I survive feeling like that for what feels like a lifetime...3 points -
The NIH article you link actually supports what I have been trying to explain to you: "Celiac disease (celiac disease) is an autoimmune-mediated enteropathy triggered by dietary gluten in genetically prone individuals. The current treatment for celiac disease is a strict lifelong gluten-free diet. However, in some celiac disease patients following a...3 points
-
Hi Marie Welcome to the forum. I am so sorry your daughter is pointing the finger at you like this. I am afraid children of any age can be very cruel to their parents - I certainly look back at some of the things I said to my mother and father in the past, and wish I could unsay them. Sometimes people just need a safe place to vent, and unfortunately...3 points
-
FDA's Inaction on Gluten Labeling Fails to Protect Celiac Patients (+Video)
KelleyJo and 2 others reacted to Helen Vajk for an article
Amen. Even worse than the food labeling is the near-complete absence of medication labeling.3 points -
Family education
knitty kitty and 2 others reacted to cristiana for a topic
@sillyyak52 Welcome to the forum! I'm just about to go away for a couple of days but read this and just had to reply. I am so sorry for what you are going through... it is really tough. Perhaps finding a short video online which explains the seriousness of celiac disease might help. Just sit your family down and say, "Please just watch this...3 points -
Being a burden to family/friends
Awol cast iron stomach and 2 others reacted to dublin555 for a topic
I totally agree, it’s so much more than just the physical struggle that occurs, there is the emotional struggle that goes along with it. It’s almost like you’re always navigating people who are uncomfortable with your needs and that pressure really wears you down. The fact is, the one that really did care will understand. This has nothing to do with you b...3 points -
Is this safe for someone with celiac disease?
knitty kitty and 2 others reacted to RMJ for a topic
I am also asymptomatic. Not everyone with celiac disease reacts the same way to the same amount of gluten, so it is impossible to say for you whether or not such small traces of gluten would be safe. I am tested for tTG-IgA and DGP IgA and IgG annually. My DGP IgA went up once when I was using a certain brand of supposedly gluten free flour, it went...3 points -
Hi @DayaInTheSun Welcome to the forum! I've been a Mod on this forum for some years now and your feelings are shared by many of us. I am not sure how long you have been diagnosed, but in my own case I do find that time has helped. It was pretty exhausting at first trying to explain to friends but they now have a pretty good grasp of coeliac...3 points
-
Two things: 1. If you are using drops 3x a day you should be sure to use preservative free. The preservatives themselves can cause irritation. 2. If the problem does not resolve, you may want to have a rheumatologist check for Sjogren's. There appears to be a relationship between celiac and Sjogren's.3 points
-
Vomiting - celiac or constipation
Scott Adams and 2 others reacted to sh00148 for a topic
Morning All, Just an update, I got an urgent appointment through my contact with PALS. The doctor confirmed her levels were the highest possible so she likely had higher levels of inflammation. Since the appointment, they ordered a second set of bloods, but as many of you confirmed he felt there was no doubt she was coeliac so asked us to start...3 points -
Yes, get serum antibody testing done for celiac disease. You could also have NCGS (Non Celiac Gluten Sensitivity). NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common...3 points
-
Celiac Maybe a Possibility?
Aleda D and 2 others reacted to Wheatwacked for a topic
It seems you have proven that you cannot eat gluten. You've done what your doctors have not been able to do in 40 years. That's your low vitamin D, a common symptom with Celiac Disease. Zinc is also a common defiency. Its an antiviral. that's why zinc gluconate lozenges work against airborne viruses. Vitamin D and the Immune System+ ...3 points -
Lymph nodes in neck + thyroid issues
knitty kitty and 2 others reacted to RMJ for a topic
I’ve had on and off swelling of a salivary gland below my jaw - sialoadenitis. It was very visible when it swelled though.3 points -
Premature Graying and Celiac Disease: A Case Study and Implications for Diagnosis
Wheatwacked and 2 others reacted to AnnaNZ for an article
I started greying in my 40s, gave up gluten in September 2023 aged 59, have taken courses of Vitamin D, B complex and zinc and my completely grey hair has started to regenerate dark brown. Real visible proof of malabsorption.3 points -
I need to correct something I wrote earlier this thread. The energy bars from Costco no longer have the Gluten Free certification on their labels. It disappeared sometime this year. The ingredients do not contain wheat, rye or barley but this product is processed in a facility where they also process items with wheat. I assume this is the problem. I...3 points
-
10 years later, my celiac is progressing
GardeningForHealth and 2 others reacted to Scott Adams for a topic
It definitely makes sense to get your vitamin & mineral levels tested before you start supplementing, and unfortunately my doctors never recommended this approach at the time of my diagnosis, nor did they ever recommend any supplementation. Unfortunately this led to many years of dealing with gluten ataxia issues that were mostly only resolved decades...3 points -
Gluten as a Proinflammatory Inducer of Autoimmunity in Everyone
Lucille Cholerton and 2 others reacted to KDrutz for an article
Wondering if they tested both organic and non-organic gluten, and if herbicides or pesticides exacerbated the inflammation response. My personal experience is that I suffered with seasonal allergies and cat allergies for years until I stopped eating gluten (when my daughter was diagnosed with Celiac). After six months or so, all of my allergies were...3 points -
This is truly a breakthrough in the diagnostic realm! Hopefully, this technology will become widely available sooner than later and save a lot of people a lot of misery in the process of trying to get a diagnosis.2 points
-
Thank you for your response. You are right, this is not worth the damage to my thyroid since I know gluten is bad for me anyway. I stopped the challenge and did the IgA and tTG-IGA tests and am waiting for results, although I know it is likely they will be false negative anyway. I figured since I wasn't ever really strict about cross contamination, they...2 points
-
Thank you all for your kind wishes, it means so much. The information you've all shared has been so useful. We have a great diabetes team and trust the consultants decision to wait a few months to repeat the blood test. We also don't want to put her through any more tests than she needs as it's so tough on her and us! It feels unbearable waiting when...2 points
-
I would think that as long as you keep your food on a wrapper or on a paper plate you would not be at risk for cross contamination. You may be overthinking it all which is common for those in the first year of the celiac journey. But let me ask you. Are you feeling self-conscious about having a celiac diagnosis? I notice the term "isolated" in your thread...2 points
-
This was the advice from the GI physician: "We discussed that your work-up is equivocal for celiac disease due to discordant serologies and biopsy results. As we discussed the gliadin DGP Ab IgA has a lower sensitivity (87%) and specificity (80-95%) for celiac disease compared to tissue transglutaminase Ag IgA (sensitivity of 95%, specificity of >...2 points
-
How many people here are aware that there are 9 types of gluten that Celiacs should be aware of?
DebD5 and one other reacted to Bebygirl01 for a topic
On my Celiac journey and discovered I was also reacting to other types of gluten. The FDA in it's finite wisdom only classifies 'wheat, barley and rye' as the gluten's to be considered when a company tests for and stamps their products as gluten free. I am curious as to how many of you are aware of the other types of glutens? And another question to those...2 points -
2 months in... struggling with symptoms
Scott Adams and one other reacted to aperlo34 for a topic
@cristiana Yes - just to add to this: my ferritin went down after my first 2 infusions (which were 8 months ago), so I got more infusions a couple of weeks ago. From those alone, I'm feeling better. It's a work in progress! Be patient! I was also taking iron supplements the entire time.2 points -
European travel with Celiac Disease
Scott Adams and one other reacted to CJF for a topic
Thank you for your response. I had read that they are more careful in the UK and the wait staff are much more aware. I always bring gluten-free snacks with me when I travel even here in the US. Airports are a nightmare to find anything that is gluten-free to eat. If you are lucky enough to find a Chick-fil-A in the airport the fries(chips) are a safe...2 points -
New to this diagnosis
Scott Adams and one other reacted to cristiana for a topic
I agree with Trents. And if you already have other health issues, it is just one other thing to have to think about. But on the matter of other health issues, depending on what they are, you may find that coming off gluten might help, which could be an unexpected bonus.2 points -
New to this diagnosis
Scott Adams and one other reacted to trents for a topic
Welcome to the forum, @Beagirl! What you are feeling is what we have all felt to one degree or another and we typically feel it more intensely when we already have a laundry list of health issues to work around. It's often the result of a sense of loss . . . of having to say goodbye to some good foods that we enjoy that may have been part of a shrinking...2 points -
Can anyone offer any advice/help please!
Beverage and one other reacted to knitty kitty for a topic
I agree with @cristianacristiana, @Scott Adams, and @trents. You probably weren't eating sufficient gluten for the test to be accurate. Ten grams of gluten for at least two weeks before testing is needed for accurate blood tests. Three gram of gluten is enough to make you feel unwell. Ten grams of gluten is required for the antibodies to leave...2 points -
Can celiac cause widespread pain??
knitty kitty and one other reacted to cristiana for a topic
Hello @Paula Andrews I started to get a whole host of new pains around the time of my diagnosis and afterwards, quite apart from the expected gastric pain. Pelvic pain was caused by bloating from dairy products; pain in my chest due to bloating caused by iron supplements; costochondritis in my ribs, which was a dull diffuse pain not emanating from the...2 points -
Oats gluten free?
Scott Adams and one other reacted to trents for a topic
Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new...2 points -
Hidden Gluten in distilled vinegar
Scott Adams and one other reacted to Manaan2 for a topic
@knitty kitty I can't thank you enough! My husband and I already started looking into those supplements. We definitely plan to give it a try. We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it. We've made many attempts to gradually decrease but...2 points -
How to Navigate Gluten-Free Dining at Popular Restaurant Chains
LovintheGFlife and one other reacted to Scott Adams for an article
2 points -
How Celiac Disease Could Increase Your Risk of Kidney Problems
Barbra S and one other reacted to Scott Adams for an article
2 points -
No, it can't be the real cause of celiac disease because celiac disease existed long before genetic modification technology existed. There is historical evidence of the existence of celiac disease from ancient times. Please provide links to support your claims and ideas about GMO wheat pollen "contaminating the entire Global wheat Supply" and being "the real...2 points
-
How to diagnose NCGS / false positive Celiac / extreme fatigue, night terrors
SunshineFace and one other reacted to Wheatwacked for a topic
During this entire discusssion of the immune system there was no refefernce to the fact that vitamim D regulates T cells2 points -
Question before first GI appointment
Wheatwacked and one other reacted to Vincent pemberton for a topic
After reading your post, I messaged my doctor and they sent me in to do blood work, I asked for an entire vitamin screen along with it. I did buy some B1 and it helped tremendously, I did give blood before taking the vitamin to ensure accurate results. My doctor isn’t worried about me doing the gluten challenge, so I’m praying the celiac panel test shows som...2 points -
Welcome to the forum, @McNeill! Gastritis, GERD is common in the celiac population. It was/is one of mine as well. Mine is complicated by a hiatal hernia such that my LES (Lower Esophageal Sphincter) doesn't seal well. Ann, you would so well to look into histamine intolerance/MCAS (Mast Cell Activation Syndrome) and a low histamine diet. The...2 points
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Forum Statistics
-
Total Topics121.3k
-
Total Posts1m
-
-
Celiac.com Sponsor (A22):
-
Celiac.com Sponsor (A21):
-
Upcoming Events
-
-
Posts
-
If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
-
Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2 0-3 is negative TTG IGG 3 0-5 is neg DGP IGA 21 20-30 is weak positive DGP IGG 4 0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.
-
By Scott Adams · Posted
This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes: -
By Scott Adams · Posted
Have you tried to start a gluten-free diet since your diagnosis in 2019? -
Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability. We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking. 3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
-