-
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 09/14/2025 in Posts
-
Not a scientific reply, but I thought I'd just chime in to reply the first part of your question: how long? Before I started to have gastric symptoms, I weighed about 66 kilos, and in the course of the following months, I seem to recall I lost about 6 kilos. From memory the last 2 or 3 kilos dropped off even when I was beginning to eat gluten free, from...3 points
-
Draft gluten-free ciders… can they be trusted ?
knitty kitty and one other reacted to Rejoicephd for a topic
That and my nutritionist also said that drinking cider is one of the worst drink choices for me, given that I have candida overgrowth. She said the combination of the alcohol and sugar would be very likely to worsen my candida problem. She suggested that if I drink, I go for clear vodka, either neat or with a splash of cranberry. So in summary, I...2 points -
Taking Probiotics but Still Getting Sick After Gluten – Advice?
Scott Adams and one other reacted to trents for a topic
The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for...2 points -
Taking Probiotics but Still Getting Sick After Gluten – Advice?
Scott Adams and one other reacted to trents for a topic
As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable...2 points -
Thank you so much for the information and kind message! Reading this transformed how I’ve been viewing my efforts and progress. Guess there’s still a lot to celebrate and also heal 😌 Yes, I’ve been taking it! Just recently started taking a multivitamin supplement and separated vitamin D! I also took chewable Iron polymaltose for ferritin deficiency 2 months...2 points
-
Diagnosed celiac for 1-2 months ago and everything makes me bloated.
Scott Adams and one other reacted to Beverage for a topic
I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats...2 points -
How long does it take to gain weight?
Beverage and one other reacted to knitty kitty for a topic
Yes, I agree, most doctors miss the subtleties of Celiac disease. The AIP diet was designed by a doctor who has Celiac herself, Dr. Sarah Ballantyne. Her book The Paleo Approach is most helpful. The AIP diet eliminates all grains and other pseudo grains like rice,corn and quinoa because they can be irritating to the digestive track. It eliminates...2 points -
Hi! Thank you so much! This was truly helpful. Most doctors I went to were absolutely uninformed and unprepared to treat a celiac patient. I will check for all the things you shared and focus on healing first! Really really thank you! Have a blessed day.2 points
-
How long does it take to gain weight?
Beverage and one other reacted to knitty kitty for a topic
Welcome to the forum, @petitojou! I lost a lot of weight, too. I found that I was low in the B vitamins and other essential nutrients. Vitamin B 1, Thiamine, is not usually tested, because blood tests are so inaccurate. Doctors are not familiar with vitamin deficiency symptoms any more. Low thiamine can cause fatigue, muscle weakness, nausea...2 points -
Coeliac and Thyroid?
Beverage and one other reacted to Peace lily for a topic
Yes I have thyroid and have had it for over 30 years and just got diagnosed for cealiac last march.I have been complaining all the years about stomach pain weight lost hair falling out they kept blaming on the thyroid and I am over 70 years old. but what I’ve been reading thyroid,diabetes,should take a closer look,I think autoimmune plays a part.All I know i...2 points -
Unusual bright yellow but odourless discharge
Healthforme and one other reacted to trents for a topic
Welcome to the forum, @Celiac50! Vitamin A toxicity is not to be taken lightly. If you suspect that is the case, I would certainly discontinue the beta-carotene supplementation. Vitamin A from natural sources is unlikely to cause toxicity. I would also get labs done to check your levels. May we ask your age? It's been over a year since you began...2 points -
Hi Christina, Thanks so much for taking time to answer in detail and share your story, too. It's a good reminder that we all walk different paths -- and that none of them are right or wrong. It seems like, with time, you've come to be able to identify clearly what your triggers are. I am hoping for this clarity for myself with more time. I am sure...2 points
-
I appreciate your struggle. I found out I was celiac at 42 and 19 years later I still make mistakes and learn more about what it means to live a healthy life without gluten. I have to ask: have you done an exhaustive purge of your kitchen? Plastic, wood, non stick cooking items? Until I did this I had issues. Good luck2 points
-
Supplements for those Diagnosed with Celiac Disease
knitty kitty and one other reacted to lmemsm for a topic
Thank you for mentioning that. My main reaction to gluten seems to be related to the skin and breaking out. So, I'll definitely take that under consideration when trying to figure out how to better supplement calcium. I'm trying to use lower oxalate and lower histamine greens like broccoli, baby bok choi, collards and Lacinto kale. Recently, I've been...2 points -
Draft gluten-free ciders… can they be trusted ?
Rejoicephd and one other reacted to Rogol72 for a topic
A friend of mine is in the bar trade most of his life and has never heard of lines being mixed for different type of beers and ciders. Better to stick with cans.2 points -
Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before. I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!2 points
-
is my celiac disease gone?
Wheatwacked and one other reacted to Rogol72 for a topic
I can confirm this. I no longer have any issues with Iodine since being strictly gluten and dairy free.2 points -
Inconclusive results
Wends reacted to deanna1ynne for a topic
She has been dairy free for six years, so she’d already been dairy free for two years at her last testing and was dairy free for the entire gluten challenge this year as well (that had positive results). However, now that we’re doing another biopsy in six weeks, we decided to do everything we can to try to “see” the effects, so we decided this past week to...1 point -
Potential celiac need advice
Scott Adams reacted to Ben98 for a topic
Yes gene HLADQ2 was positive1 point -
Inconclusive results
Wends reacted to deanna1ynne for a topic
Thank you both very much. I’m pretty familiar with the various tests, and my older two girls with official dxs have even participated in research on other tests as well. I just felt overwhelmed and shocked that these recent results (which I found pretty dang conclusive after having scott clean labs just six months ago) would still be considered inconclusive. ...1 point -
Inconclusive results
Wends reacted to knitty kitty for a topic
Don't skimp on the gluten daily while undergoing the gluten challenge!1 point -
Tea Bags and Gluten
Scott Adams reacted to Inkie for a topic
Thank you for the information ill will definitely bring it into practice .1 point -
Potential celiac need advice
Wheatwacked reacted to itsdunerie for a topic
Dang......did it again and yeah I should admit I am 63 with clumsy phone thumbs. I started feeling better quickly and a doctor a year later said I had to eat poison (gluten) every day for a month so he could formally diagnose me and NO FREAKING WAY. I couldn't then and can't imagine putting my body through that crap (no pun intended) on purpose ever again...1 point -
Potential celiac need advice
Scott Adams reacted to itsdunerie for a topic
15 years ago my best friend 'diagnosed' me as Celiac. Her little nephew had been formally diagnosed and her observations of me dealing with brain fog, stomach problems and other stuff had her convincing me to try going gluten free. Oh my heavens, within 3 days, no lie, I felt human again. Took me about a y1 point -
Buckwheat
Scott Adams reacted to trents for a topic
Buckwheat is not related to wheat at all. Buckwheat is related to rhubarb. There should be no dermatitis herpetiformis trigger there.1 point -
Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I...1 point
-
Thank you so much! I saw some tips around the forum to make a food diary and now that I know that the community also struggles with corn, egg and soy, the puzzle pieces came together! Just yesterday I tried eating eggs and yes, he’s guilty and charged. Those there are my 3 combo nausea troublemakers. I’m going to adjust my diet ☺️ Also thank you for...1 point
-
Frequent nausea after gluten-free diet
Scott Adams reacted to petitojou for a topic
Hi! Thank you Of course! I still live with my family; there used to be six of us, and now there are four. I rarely leave the house or eat out. Although my mother has also been diagnosed with celiac disease, she does not follow the same precautions as I do. I use separate kitchen utensils (different spatulas, pans, dish towels, plates, toaster - almost...1 point -
Unusual bright yellow but odourless discharge
Celiac50 reacted to knitty kitty for a topic
Having a RAVENOUS appetite (or conversely no appetite at all - anorexia) and unintended weight loss are symptoms of early thiamine deficiency. People who are physically active, athletes, physical laborers, those who exercise outside regularly have a higher metabolic need for thiamine. Exercising outside regularly can cause more thiamine loss because...1 point -
Hi there, thank you very much for sharing your story. It is a condition that requires our effort, learning, and and attention for a lifetime: always new ways to grow and learn, like you said. And looking at it as a way to learn is a beautiful way of thinking about things; thank you. I have done so. I lived alone at my point of diagnosis and still do...1 point
-
Hello Scott, Thank you for your incredibly thoughtful and kind response to my post. It's a great reminder that things are often more than what meets the eye and that social media often isn't an accurate representation of reality. Reading your response reminds me that I have been very diligent in my healing and in trying to find answers. I suppose...1 point
-
Major Glutening
Mari reacted to knitty kitty for a topic
Oh, @FayeBr, you poort thing! I've had episodes similar to yours, taking something that is supposed to help, but makes symptoms worse. You're not alone. Hold tight, we'll get you through this. Acid reflux can be caused by not enough digestive enzymes, contrary to the assumption that overproduction of digestive acids causes acid reflux. The cells...1 point -
Is Caputo gluten free flour really free of gluten?
Scott Adams reacted to Godfather for a topic
Scott: Thanks ever so much. Lots of good information and the 1999 study was especially encouraging.1 point -
Struggling to get into a good pattern
Rejoicephd reacted to knitty kitty for a topic
Yep,yep,yep, called it from experience. I've lived through SIBO and Candida myself. I get a different sorts of reactions to dairy, high sugar consumption, and gluten. I react to Casein, the protein in dairy. Try the AIP diet. Dr. Sarah Ballantyne designed it and is a Celiac herself. Her book, the Paleo Approach, has been most helpful.1 point -
Struggling to get into a good pattern
knitty kitty reacted to Rejoicephd for a topic
You called it @knitty kitty. I went to another health care provider for another opinion, and based on some tests they did, they suggested I might also be dealing with a fungal issue (candida and/or mold). I saw that you mentioned before in this chain that some people on this forum also get Candida infections. So it seems that I am possibly dealing that...1 point -
Gluten Allergy
knitty kitty reacted to Scott Adams for a topic
The concept of "over-methylation" as a common clinical condition is not supported by mainstream medicine. While methylation is a crucial biochemical process, the idea that people frequently become "over-methylated" and that this is linked to B6 deficiency is a speculative theory, not an established fact.1 point -
Struggling to get into a good pattern
Rejoicephd reacted to knitty kitty for a topic
@Rejoicephd, I took high dose Vitamin D to correct my severe deficiency quickly. It's safe to do this. I felt much better once my Vitamin D level was about eighty ng/mL. Vitamin D works as a hormone and helps calms the immune system between 80 - 100 ng/mL. High-Dose Vitamin D Supplementation Can Correct Hypovitaminosis D Prior to Total Knee...1 point -
Gluten Allergy
Scott Adams reacted to MMeade for a topic
Thank you so much Scott- hearing this actually brought tears to my eyes! It is so hard to explain to people/in-laws who question me all the time- I’ve considered just telling them I have celiac disease to stop the questions. Knowing I’m not alone helps tremendously. Thank you 🙏1 point -
Has anyone ever had Low Ferritin with Elevated MCHC levels?
knitty kitty reacted to cristiana for a topic
Hi @knitty kitty Thank you, Kitty, and lovely to hear from you as well as trents on this one, I do appreciate your knowledgeable replies. Haemoglobin A1C and HBA1c have both come back as normal, so I think I am OK there - although I'll freely admit that I love sweet things and if they ever design a test which shows consumption of carbs over time...1 point -
Has anyone ever had Low Ferritin with Elevated MCHC levels?
cristiana reacted to knitty kitty for a topic
Hi, @cristiana, @trents is correct. Red blood cell size is important. High blood glucose blood levels can affect red blood cells causing them to bloat, then shrink which causes the iron to become concentrated, thus higher mchc. Have you increased your carbs to compensate for reducing your meat? All those oats? Have you had an A1C test...1 point -
Yes, there are different kinds of anemia. Ferritin is an iron storage protein so you can have plenty of iron floating around in your blood but not enough in storage in some cases. Also, the shape and size of red blood cells figures into all of this somehow. If they are the wrong shape and size they don't function properly for binding with oxygen like they...1 point
-
Causes of High MCHC: A high MCHC can also be due to anemia, depending on the type of anemia you have. Hemolytic anemia may lead to an MCHC measurement above the normal range.1 Hemolytic anemia develops when red blood cells break down faster than they can be replaced.8 This type of anemia can happen for several reasons, including: Autoimmune conditions ...1 point
-
Draft gluten-free ciders… can they be trusted ?
Scott Adams reacted to Rejoicephd for a topic
Thanks very much for confirming my suspicion @Scott Adams! That helps a lot because I'm really trying to track down and get rid of these sources of cross-contact and so I'm going to just rule out the draft ciders and hope that helps. Also @Rogol72 its nice to hear you haven't had a problem on that side of the pond - draft cider lines being used for cider...1 point -
Gluten challenge and Hashimoto's Thyroiditis
Scott Adams reacted to Zuma888 for a topic
Negative, although I had most of the symptoms of celiac disease. I now eat as if I had a diagnosis.1 point -
Draft gluten-free ciders… can they be trusted ?
Rejoicephd reacted to Scott Adams for a topic
Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...1 point -
Could this be a new intolerance
Scott Adams reacted to trents for a topic
Nuts are a common source of food allergy reaction/intolerance/sensitivity. But fish usually not. Of course, intolerances can develop to any food, whether or not they are common ones. I'm at a loss here.1 point -
Hello everyone, first time poster here looking for a little advice on my situation. I (32 year old male) have been experiencing a lot of different health issues for a long time now - I can't pinpoint when anything in particular started, but we are talking a minimum of 5 years for most symptoms, some much longer. I have been ploughing ahead for a long...1 point
-
Since those with celiac disease have a much higher chance of having or getting additional autoimmune diseases it could definitely affect your health insurance rates. Prior to the Affordable Care Act (ACA), individuals with celiac disease could indeed be charged significantly higher premiums for private health insurance or even be denied coverage altogether...1 point
-
7yo struggling!
Oldturdle reacted to Scott Adams for a topic
It's incredibly tough to watch a young child grapple with the frustration and sense of deprivation that comes with a restrictive diet, and your empathy for her is the first and most important step. At seven, children are deeply focused on fairness, and her feelings are completely valid. To support her mental health, shift the narrative from "missing out"...1 point -
How to Find a Celiac-Savvy Doctor – Tips & Resources
Jmartes71 reacted to Scott Adams for a topic
Finding a doctor who truly understands celiac disease can be challenging—many still rely on outdated info or dismiss lingering symptoms. Here's what's worked for me and others in the celiac community: 1. Start with a Gastroenterologist (GI) Specializing in Celiac Look for GIs affiliated with celiac research centers (e.g., Columbia University, ...1 point
-
Celiac.com Sponsor (A19):
-
Member Statistics
-
Celiac.com Sponsor (A20):
-
Forum Statistics
-
Total Topics121.4k
-
Total Posts1m
-
-
Celiac.com Sponsor (A22):
-
Who's Online (See full list)
-
Celiac.com Sponsor (A21):
-
Upcoming Events
-
Posts
-
Hi Theresa, A few of my friends have your same story. You may be right about barley, etc. 18 years ago at a football game while clapping, suddenly my 4th finger was in agony. It looked like a vein had burst. It was blue for a couple hours, then disappeared. Finally realized it happened every time when drinking beer. It's occurred several times over the years when opening a jar, lifting something that was a bit heavy, holding on to tight to something. Immediate icing stops the pain and discoloration. Now avoiding wheat in the US, it rarely happens. Thanks for the reminder. Will have Entero Labs run another test. Unfortunately they've relocated to Switzerland/Greece.
-
The EMA test is an old and less sensitive test for anti-tTG2 antibodies. It relies on a technician using a microscope to check for fluorescence of a labelled substrate (typically monkey oesophagus or human umbilicus), giving a simple positive/negative result. It is similar to running a standard anti-tTG2 test but with a high cut-off, making it more specific but less sensitive. Transient rises in tTG2 can be caused by e.g. viral infections and inflammation. Very high levels of anti-tTG2 (>x10 standard range) are almost certainly coeliac disease but moderately raised levels can have several causes apart from coeliac disease. Other food allergies can cause villi blunting but that is much rarer than coeliac disease or other non-coeliac causes. Not All That Flattens Villi Is Celiac Disease: A Review of Enteropathies
-
By Theresa2407 · Posted
Maybe you have a low intolerance to Wheat. Rye, Barley and Malt are the gluten in Celiac disease. It has always been stated Wheat and Gluten, not just a Wheat intolerance. Barley will keep me in bed for (2) weeks. Gut, Migrains, Brain fog, Diahrea. It is miserable. And when I was a toddler the doctor would give me a malt medicine because I always had Anemia and did not grow. Boy was he off. But at that time the US didn't know anyone about Celiac. This was the 1940s and 50s. I had my first episode at 9 months and did not get a diagnosis until I was 50. My immune system was so shot before being diagnoised, so now I live with the consequences of it. I was so upset when Manufacturers didn't want to label their products so they added barley to the product. It was mostly the cereal industry. 3 of my favorite cereals were excluded because of this. Malt gives me a bad Gut reaction. -
Thanks much Scott. Well said, and heeded. I don't have Celiac, which is fortunate.
-
By Scott Adams · Posted
Do you have the results of your endoscopy? Did you do a celiac disease blood panel before that? 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:
-
