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Showing content with the highest reputation since 12/22/2024 in all areas
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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
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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
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Hey @Morgan Tiernan, Sounds just like my experience. I was diagnosed with dermatitis herpetiformis over 10 years ago. It appeared suddenly as a very itchy rash which looked like Eczema. When a steroid cream didn't clear it up, my Dermatologist (who had come across it before) suspected dermatitis herpetiformis and performed a skin biopsy which came back...2 points
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Another factor revealed in your test results is that you are IGA deficient. Look at the line: Immunoglobulin A, Qn, Serum 35 (L) Reference range: 87 - 352 We also call that "total IGA". IGA deficiency results on in artificially low scores in the individual IGA celiac antibody test scores. In other words, the test score for the tTG-IGA would...2 points
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Thank you so much for the detailed reply! I was just eating my normal diet so wasn't going out of my way to eat gluten. The week before my blood test I actually had a stomach virus so I wasn't eating much of anything so I do wonder if that contributed at all. Before the biopsy I was just eating my normal amount of gluten, I would say two slices of bread per...2 points
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How to navigate living with dermatitis herpetiformis
Morgan Tiernan and one other reacted to trents for a topic
Welcome to the forum, @Morgan Tiernan! I find it outrageous that your physicians refused to test you for celiac disease despite what were obviously outbreaks of dermatitis herpetiformis. Every physician should know that dermatitis herpetiformis is a classic symptom of celiac disease! In fact, celiac disease is the only known cause for dermatitis herpetiformis...2 points -
Not All Corn Grits are Safe
Scott Adams and one other reacted to ShariW for a topic
I don't react to corn in general. I think it was cross-contact in manufacturing that got me. But if I do find that I have problems with gluten-free grits, I will see corn elimination in my diet will solve the issues.2 points -
Family education
knitty kitty and one other reacted to trents for a topic
Although I disagree with interjecting the element of dermatitis herpetiformis since this is not a real issue for the OP, I think Rogo72 gives good advice about how to navigate social situations as a celiac when finding yourself in unsympathetic company. It requires developing somewhat of a tuff skin and holding your ground in order to be safe. The psychology...2 points -
Another strange failure of the FDA just happened to me. Like many, if I DO ingest gluten I experience massive projectile vomiting. This can be life threatening when it messes with my insulin/food balance. So my doctor has prescribed for years two anti nausea drugs. I don't, thank goodness, have to use them often. This time, my doctor apparently, when...2 points
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Cycle of dermatitis herpetiformis
knitty kitty and one other reacted to Hopeful1950 for a topic
Oh yes. I would never recommend taking it for an extended period of time. When 70% of my body was covered in blistering itchy sores, an amazing doctor prescribed it diagnostically because I was unwilling to do a gluten challenge after already going strictly gluten-free in desperation after 10 years of suffering and being poo pooed by dermatologist after...2 points -
Being a burden to family/friends
knitty kitty and one other reacted to cristiana for a topic
I must admit I've been on both sides. Before my diagnosis, and in my ignorance, I thought all the special diets we see around us today were unnecessary and people were making a big fuss over nothing. There is a shop in the small town where I live that sells organic and gluten free food and I used to see people walking in and buying things and thought they...2 points -
Matthew 18:21-352 points
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Thank you for this! "Medical" advice, and I use the term loosely, is so rampant and so unproven nowadays (I even have relatives that fall down these rabbit holes and are shocked I don't follow.), so I am skeptical of everything. I appreciate the confirmation of my suspicions that this was more hearsay. Onward with my rice and corn. lol2 points
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Rice, corn, and other gluten-free grains.
ShariW and one other reacted to Scott Adams for a topic
Your approach is spot-on—trusting reliable sources like Mayo Clinic and sticking to a gluten-free diet that works for you is the best way to navigate all the noise out there. The claim that rice and corn contain forms of gluten harmful to celiacs is indeed a misconception. While these grains do contain proteins that may technically be referred to as "glutens" ...2 points -
A video with researcher William Parker about Helminthic Therapy
dixonpete and one other reacted to John Scott for a blog entry
This one page has all the information your friend needs. https://www.helminthictherapywiki.org/wiki/Helminthic_therapy_and_inflammatory_bowel_disease_(IBD) And, if he's on Instagram, he might like to follow this young lady who's recently managed to get into drug-free remission by using helminths, after 13 very challenging years with Crohn's. https...2 points -
A video with researcher William Parker about Helminthic Therapy
John Scott and one other reacted to Scott Adams for a blog entry
FWIW, I have a friend who has Crohn's Disease, and had surgery for it when he was younger, but doesn't want to take some of the prescription medications to help him deal with ongoing symptoms. I told him to look into hookworms treatment.2 points -
High dosage of B12 gave me life.
knitty kitty and one other reacted to trents for a topic
I think you would do well to take a high potency B-complex such that you get more balanced dosage across the spectrum of B vitamins. They work in concert.2 points -
Coping with celiac
Scott Adams and one other reacted to Mari for a topic
mcg Vit. B12Hi dlaino - You mentioned that you are now feeling sick all the time. If this is making you miserable you might want to go to your health provider, describe what you are feeling and your symptoms so that theySome of the people here can give you useful advice about taking supp;ements and the amounts you could take to improve your overall health...2 points -
Welcome to the forum, @Kwinkle! Realize first that the B vitamins are water soluble which means excess is excreted in our urine and does not build up in our tissues like fat soluble vitamins do. So, there is little risk of toxicity with large doses of the B's. Second, if you start with smaller doses they may not be large enough to be therapeutic...2 points
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I would not be comfortable with just wiping down the rack after a gluten-containing food was cooked on it. When I cook pizza in the oven, my gluten-free pizza goes on the top rack - nothing else is ever placed directly on that top rack, gluten or not. Contact with minute traces of gluten cause me symptoms within a few hours. If I heat a gluten-free roll...2 points
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Guidance on next steps after the lab tests
Scott Adams and one other reacted to Beverage for a topic
My D was always low. It got better with gluten free diet, but was always below range or barely in range. I tried increasing D vitamins, found that K2 helps absorption of D. It improved a bit, yet remained on low end of ok range. After covid and bad flu years, i really wanted to get my D way up. We live in the Pacific Northwest, do lots outside 3/4 of...2 points -
Being present in same room as gluten pasta cooking
Scott Adams and one other reacted to RMJ for a topic
Scientist here: Actual steam shouldn’t contain gluten - the gluten molecule is too large and heavy. In distillation the larger/heavier molecules stay with the liquid. However a quick google search shows plenty of people who say they react when pasta is cooked. Vigorously boiling pasta water could also create droplets that are larger than steam droplets t...2 points -
Being a burden to family/friends
Beverage and one other reacted to knitty kitty for a topic
@DayaInTheSun, Have you been checked for nutritional deficiencies? The gluten free diet can be low in the eight essential B vitamins. Most Celiac are low in Vitamin D, which helps calm the immune system. Thiamine (Benfotiamine) helps calm mast cells so they don't release histamine at the slightest provocation. Taking a B Complex and Benfotiamine...2 points -
Eye irritation 2.5 months into gluten free diet
Scott Adams and one other reacted to dirkmatthews for a topic
I found out I had celiac because of eye problems. I developed an eye irritation that was sensitive to light, pressure, and red. My eye doctor said I had iritis, an inflammation of the iris. The treatment was prednisone drops. This is a common symptom related to ankylosing spondylitis, a form of arthritis that runs in my family. My doctor wanted to start me...2 points -
Being a burden to family/friends
Scott Adams and one other reacted to RMJ for a topic
I’ve been to restaurants for lunch with people from work and not eaten anything. One time I just had a bowl of white rice. The restaurant didn’t care and nobody made any nasty comments. It took some bravery on my part to do that but it turned out fine. I just tell people I’m there for their company, which is more important to me than the food.2 points -
Let me "ditto" Cristiana's welcome to the forum, @DayaInTheSun! Many in this online family can identify with your struggle. With all of your food sensitivity/intolerance issues you probably should research MCAS (Mast Cell Activation Syndrome) and consider a low histamine diet.2 points
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Celiac And Eggs
knitty kitty and one other reacted to MommaBear82 for a topic
I just wanted to point out that the QUANTITY of exposure to eggs in baked goods would naturally be much less than if you were to eat a whole egg. I think that's why they appear to be tolerated in baked goods, but not as a stand-alone food.2 points -
Test result insight
Scott Adams reacted to disneyfamilyfive for a topic
Thank you! This will be so helpful. It’s overwhelming for sure!1 point -
https://www.healthline.com/health/at-home-celiac-test#_noHeaderPrefixedContent1 point
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Can food allergies like milk and soy flatten villi?
Scott Adams reacted to Deanne jones for a topic
Hi Kitty, thank you for your e mail, I have seen a nutritionist who seemed to be happy with the food diary I had been keeping and nothing was mentioned about extra vitamins, and I’m still using milk etc . The steroids seem to be working and everything is functioning as it should however, the course of tablets finish at the end of February and I...1 point -
I hope you don't have to wait too long until her endoscopy. Is she able to bring her lunch with her in the meantime?1 point
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Coping with celiac
Scott Adams reacted to Lindquist for a topic
Low carb high fat see www.dietdoctor.com1 point -
Wholefoods 365 Organic Wheatgrass Powder
Scott Adams reacted to Katya773 for a topic
Ohh gotcha , thank you! Makes sense why I got so sick 😕 Definitely avoiding this in the future1 point -
Can food allergies like milk and soy flatten villi?
Scott Adams reacted to Lotte18 for a topic
Hi Scott, I thought I'd be like "most people" and could go back to having dairy once my villi had healed. But after dealing with neurological problems that cropped up long after my gut had healed it turned out that this just wasn't true. I have no idea if celiac influences pancreatic enzyme production or if it's the other way around--for some of us-- but...1 point -
Diabetic 2
ShariW reacted to knitty kitty for a topic
Hello, @Lightingthunder2, I understand how confusing Celiac can be, especially when one develops other health problems. I developed Type Two Diabetes and was prescribed Metformin. I started feeling weak and tired. I searched for answers using my nutrition and microbiology education to find answers. I learned that Metformin can cause Thiamin...1 point -
A video with researcher William Parker about Helminthic Therapy
John Scott reacted to dixonpete for a blog entry
1 point -
Celiac Maybe a Possibility?
Scott Adams reacted to Aleda D for a topic
Thank you for the warning. I get blood tests twice a year to check where I stand with the vitamins I regularly take, so I appreciate the extra reminder. I know some vitamins don’t build up but now I will watch the B6 for sure.1 point -
Canadians Call for Financial Relief for People with Celiac Disease
Scott Adams reacted to trents for an article
Andre, what if it costs the producer much more to make gluten-free bread than wheat bread but they cannot charge more in order to cover the extra expense? Is that fair? And what will happen in that case? Will the government need to subsidize the product? Will food companies just quit making gluten-free bread because they are losing money? Will food companies...1 point -
A video with researcher William Parker about Helminthic Therapy
dixonpete reacted to John Scott for a blog entry
You’ve touched on some big issues that really need evidence for a fuller understanding. I agree that we don’t need tuberculosis or trichinosis, and that the reduction in these and many other infections has undoubtedly contributed to the increase in longevity seen in the West in the past century. And yet some infections can actually be beneficial, as...1 point -
Symptoms and trying to figure this out
Scott Adams reacted to trents for a topic
Welcome to the forum, @KCGirly! From Wikipedia on Semaglutide: "The most common side effects include nausea, vomiting, diarrhea, abdominal pain, and constipation." How much gluten are you consuming daily? Recently revised recommendations are for the daily ingestion of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for at...1 point -
Guidance on next steps after the lab tests
knitty kitty reacted to ABP2025 for a topic
I wish more doctors emphasized on the importance of Vitamin D. I'll increase the Vitamin D3 supplementation from 2000 IU to 4000 IU. I'll also try Benfotiamine and see if my symptoms improve. Thanks for your suggestions.1 point -
Guidance on next steps after the lab tests
Beverage reacted to knitty kitty for a topic
@ABP2025, Here's some studies and articles that will help you learn more about thiamin and all... I will write more later. https://hormonesmatter.com/thiamine-deficiency-testing-understanding-labs/ And... Thiamine and benfotiamine: Focus on their therapeutic potential https://pmc.ncbi.nlm.nih.gov/articles/PMC10682628/ and... ...1 point -
Eye irritation 2.5 months into gluten free diet
Scott Adams reacted to aperlo34 for a topic
Yeah, I think that’s what’s going on. I’ve been following my eye dr’s recommended routine of eye drops and heating mask and today I feel much better. I’m also trying to cut out dairy for a month to see if maybe there’s something there. I would love for the eye problems to go away, it’s scaring me - the celiac felt like it was out of nowhere 😓 ...1 point -
How to Transition to a Gluten-Free Diet: A Step-by-Step Guide (+Video)
Scott Adams reacted to DonnaKEllis for an article
Thank you for this information. I have not yet been diagnosed, but I am almost CERTAIN that this is what I have had for a number of years.....in fact most of my life. I have been treated for "chronic migraine" and as my bouts of diarrhea have gotten worse, I now have sought out a gastroenterologist. He had access to many of my old records and told me...1 point -
Cycle of dermatitis herpetiformis
pmarklesparkle reacted to Scott Adams for a topic
The only way to know for sure is to get a biopsy for DH, and also a blood panel for celiac disease. 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 -
He could also have NCGS (Non Celiac Gluten Sensitivity) for which there is currently no diagnostic test per se. It is diagnosed by symptomatically reacting to gluten consumption similarly to those with celiac disease when the celiac tests are negative. In large part, the symptoms are the same, the long term health risks are the same and the antidote is the...1 point
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I’m reading that some sites list a high Immunoglobulin A result for my age above 300, another site says above 356, and other sites are saying above 400. I don’t know what to make of this result 🤷♂️
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You got some bum steers my friend. I have little confidence that you can trust your test results as differentiating between NCGS and celiac disease. And I think you would be much more likely to have gotten that note you need if you had been diagnosed with celiac disease. But believe me, I understand the predicament you are in with regard to the risks of repeating the gluten challenge. We have heard this story many times on this forum. People experiment with the gluten free diet before getting an official diagnosis and then cannot tolerate the gluten challenge later on when they seek an official diagnosis.
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For the upper gastrointestinal endoscopy, they said 7 days of gluten. So I did 8...fast food and Krispy Kreme doughnuts. For the earlier blood test, the younger doctor said I didn't have to. My immune system went down, I was in the bathroom a lot, and as my wife said my brain wasn't braining.
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Thanks guys. I just got my results but I don’t know what they mean… celiac disease reflex panel Immunoglobulin A normal range 66-433 my results are a score of 358. Is this normal? I have no idea what to make of it…
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How long was your gluten challenge? I hope it was longer than a week. If not, your testing was likely invalid. Recently upgraded guidelines call for the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat bread) for at least two weeks prior to either the blood antibody test draw or the endoscopy/biopsy. And if you had been gluten free for all those years, you likely had lost any tolerance to gluten you may have had when consuming it regularly. That's probably why it was such a tough sledding experience. Before I was diagnosed, I had very minor GI symptoms. Now, after many years of being gluten free, I get violently ill for hours if I get a good slug of gluten, like when I got my wife's wheat biscuits mixed up with the gluten free ones she made me.
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