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Showing content with the highest reputation since 01/12/2010 in Blog Comments
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Head ache after eating
Awol cast iron stomach and 2 others reacted to trents for a blog entry
The headaches could be triggered by something in her diet besides gluten. Over time, celiacs commonly develop allergies/intolerances to other foods besides those containing gluten. This is because of damage to the mucosal lining of the small bowel which allows larger than normal protein fractions to cross into the blood stream. We call this "leaky gut syndrome...3 points -
Most the pain went away when it popped it back in, after that it was thanks to tramadol.
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Hookwormed status report
Scott Adams and one other reacted to dixonpete for a blog entry
I should add that hookworms aren't a cure for celiac disease. Some people, and I couldn't tell you how many, stop evincing the symptoms of celiac disease while their hookworm colonies are healthy. Others have a reduction in the severity of their reactions to gluten, but should still stay well away from it. And other people don't seem to be helped much at...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 -
On my controversial celiac status
Sam711 and one other reacted to Elaine Browning for a blog entry
Totally agree I had positive antibodies but no biopsy no need it’s barbaric it’s clear when you know you know2 points -
More info about Vitamin Deficiencies
Charliexxx and one other reacted to LisaSan111 for a blog entry
Thank you for sharing your story so others can benefit from your experiences and expertise. My heart breaks for all you've gone through and I cannot begin to imagine going through all that because of the incompetence of the very people who are supposed to prevent all that.2 points -
How t-reg cells can prevent autoimmune disorders.
Charliexxx and one other reacted to T burd for a blog entry
Thank you! I do have other autoimmune issues from not being diagnosed until 38. I know celiac does a number on your natural gut flora.2 points -
"Treating all nutrient deficiencies and fully healing your gut will not allow those with celiac disease to eat gluten again." Gosh I wish that taking vitamins would 'cure' my celiac. Alas in the 20 years since I was diagnosed that has not been the case. Even the tiny amount that I might encounter in my volunteer work at a food panty ( shelving bread...2 points
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Head ache after eating
knitty kitty and one other reacted to RebeccaMSL for a blog entry
I agree. I have a bunch of auto immune diseases, (including Celiac and Type 1 Diabetes and Hashimotos and Reynauds and Sjogrens and NLD...) and recently learned I also have a mast cell activation syndrome with gi presentation. The mast cell episodes are usually triggered by histamines. The histamines in red wine, tomatoes and aged/jarred foods like roasted...2 points -
Vitamin Deficiency Testing
esteloca and one other reacted to Posterboy for a blog entry
Knitty Kitty, I think you have probably read this before but it is worth sharing for others who might run across this thread for others' still searching for a cause of their co-existing issues not directly related to their Celiac diagnosis like horrible fatigue. See this Hormones Matters article about how Vitamin deficiencies like a Thiamine deficiency...2 points -
My Emails
tessa25 and one other reacted to Amanda smith171717 for a blog entry
Hello, I am the Amanda who’s mom made this blog and I know a lot of people who have ready this whole blog saw that I got a make a wish trip to Disney and that may have scared people into thinking maybe I wouldn’t make it. So I guess I’ll just let everyone know. I’m okay and at the time this blog was made I was two and now I’m 17 about to be 18.2 points -
Update April 2020
Posterboy and one other reacted to knitty kitty for a blog entry
Keight, Do be careful of the Paleolithic Ketogenic Diet. Here's a video that explains it better than I ever could. Please watch it. What this doctor says is true. I learned the hard way.2 points -
Open Letter to the many GI sufferers Part 2 still suffering Look Beyond these symptom’s to the Parent Disease Pellagra with these many unruly children like IBS, GERD, UC, etc. up to and including NCGS and Celiac Disease (in Time I believe) Part 2
Wheatwacked and one other reacted to ch88 for a blog entry
Posterboy, I have read about possible benefits from taking high dose niacin for some people. However, I am still don't think it is safe. The daily value for niacin according to the Mayo Clinic is 16 milligrams (mg) a day. I can see how taking a really high dosage of slow release Niacin could through off the bodies chemistry even if small dosages are...2 points -
The beginning
Jenifer B and one other reacted to Ennis-TX for a blog entry
I do my own blog of venting and things that come into my mind or my life. Most of it just rambling, but feed back is always welcome. I will admit holidays have become.....different, but I also had family deaths on both sides that make no one want to meet up anymore. I still offer to host and cook all gluten free meals, ham, broccoli casserole, deviled eggs...2 points -
Day 9 of gluten-free
Ms. A and one other reacted to cyclinglady for a blog entry
Do you want to feel better faster? Do NOT eat out for the next few months or until all your symptoms have resolved. Eating out and not mastering the gluten free diet (e.g. reading labels) are the main reasons celiacs tend to take a year or longer to heal or bring down their antibodies. Each gluten exposure you have will trigger the immune response triggering...2 points -
Hi, Vickie this post was actually my personal blog post on this site, and some issues I am dealing with after a recent gluten exposure has caused some digestive troubles. You should start a new thread on the main forum. Cancer is a serious issue if you wish to try a natural treatment that is your choice, try rotating your veggies, you might have a sensitivity...2 points
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Hookworms and ChatGPT5
John Scott reacted to dixonpete for a blog entry
I asked a logical follow-up question to ChatGTP5: Can you estimate what percentage of celiac hookworm hosts like myself achieve full remission from the disease? ChatGPT said: Great question, Pete. Let’s be very clear here: There isn’t a single hard number published for “what percentage of celiacs with hookworms achieve full remission,” but...1 point -
Father, it's been some time since my last hookworm larvae innoculation
John Scott reacted to dixonpete for a blog entry
Takes about about a week to heal up. Surprisingly painless.
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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...
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A video with researcher William Parker about Helminthic Therapy
John Scott reacted to dixonpete for a blog entry
Necator americanus is particularly well adapted to humans. Personally I don't know of any cases outside of accidental overdoses where Helminthic Therapy self-treaters have suffered harm from NA. Sometimes the treatment doesn't help, and very occasionally side effects are intolerable. In those cases, if desired the worms can be killed off. Regular medical...1 point -
A video with researcher William Parker about Helminthic Therapy
John Scott reacted to dixonpete for a blog entry
I don't buy it either. I think a much better explanation is that humans evolved with hookworms just as hookworms evolved with us. The immunoregulatory activities that hookworms conduct to avoid expulsion from the gut have over time been incorporated into how the gut immune system works as a whole, and without hookworms present the gut immune system is incomplete...1 point -
Thiamine Deficiency Disorders
knitty kitty reacted to Celiac16 for a blog entry
Oh my gosh I am reading my exact story… I just responded to a bunch of problems posts saying the same things… I do pretty much atkins too (under 20g carbs) which has been lifesaving in addition to thiamine. Symptoms are gradually improving, POTS isn’t as bad, and haven’t had the vertigo or nausea I had every time I ate. I think blood sugar may have be...1 point -
Health update
John Scott reacted to dixonpete for a blog entry
I forgot to address the 'gross' factor you mentioned. Over these last six years that I've been doing HT I've come to greatly respect Necator americanus. It's supremely adapted to humans, and I believe its presence is actually a requirement for good health for many people. I think I read that most all mammals carry hookworms in their gut in nature. It...1 point -
Health update
John Scott reacted to dixonpete for a blog entry
Hi Diana, The hookworms are a must for me as the improvement in colitis is life changing. Not having to worry and gluten or gluten contamination is simply a huge plus. You might remember the last time when I wrote about being without hookworms and consumed a meal of non-gluten-free oatmeal. I suffered a complete bowel evacuation and darn near passed...1 point -
Day 10 post inoculation
Blue-Sky reacted to Scott Adams for a blog entry
It's not semantics, if you don't get your antibody levels checked you won't know if your autoimmune reaction is ongoing. A treatment that might mask the symptoms (my doctor gave me many of these) does not mean you are disease-free and that you won't suffer future consequences of not treating the root cause of it--in this case by going on a gluten-free diet...1 point -
Day 10 post inoculation
John Scott reacted to dixonpete for a blog entry
By gluten test I meant not having GI symptoms from consuming gluten. I've been around this block a few times now. If my hookworms are healthy, then so am I.1 point -
Here Goes The Cold Water.
Scott Adams reacted to Charliexxx for a blog entry
Hi Justin, I am so sorry to read your story. I can empathise, the severe depression, the dropping out of studies, sleep problems and all the issues with the stomach. You finally have a diagnosis and yes it can really just be celiac disease. There’s access to lots of information and support. The science bit, I won’t be technical but if we cannot abs...1 point -
Maddie, I believe you are referring what is known as the Marsh scale. It rates the damage done by celiac disease to the villi that line the small bowel. They take samples from the lining of the small bowel with a scoping tool and then send it to a lab for viewing under a microscope. The amount of damage to the villi is given a rating of 1-4.1 point
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To All, Because Editor is now locked down tighter than a Tick.... I wanted to edit the comment for clarity.... So I adding ETA for clarity.... Read it ALL when you get a chance..... I meant to say....but didn't clearly communicate it properly.... Also see this Case Study of Hallucinations that got better in a Celiac Patient AFTER...1 point
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Vitamin Deficiency Testing
knitty kitty reacted to Posterboy for a blog entry
Knitty Kitty, Thank you for starting a blog post about this information. Test(s) often marginalize a deficiency even when taking a B-Vitamin/complex can help many people even when the cut-off for the test show a marginal deficiency. See this research that shows over a 1/3 of women in the UK has a marginal Riboflavin deficiency and nearly a...1 point -
Hi Keight, Fatigue is fairly common in newly diagnosed celiacs IMHO. It can take some time to get the gluten-free diet down right. Mistakes are common enough and even one can set healing back for months. People are often lacking some vitamins and minerals also, and that slows healing as well. Plus not absorbing carbs and fats well reduces the...1 point
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Welcome!!1 point
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Cyclinglady, If you go back and look at the link I quoted it was about a Riboflavin deficiency also known as Pellagra Sine Pellagra...NOT Pellagra.... but close enough to mimic GI Problems without Skin Involvements.... I was telling Ch88....I got it wrong....I did not have Pellagra because my skin was not involved in my diagnosis...it was a...1 point
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Open Letter to the many GI sufferers Part 2 still suffering Look Beyond these symptom’s to the Parent Disease Pellagra with these many unruly children like IBS, GERD, UC, etc. up to and including NCGS and Celiac Disease (in Time I believe) Part 2
squirmingitch reacted to cyclinglady for a blog entry
Celiac.com has many many members —thousands. Has any member actually been diagnosed with Pellegra by a medical doctor? Has anyone after World War II been diagnosed in the U.S.? “Improved socioeconomic conditions, change in dietary practices, and food fortification with niacin were all responsible for the eradication of pellagra from the post–Wor...1 point -
Intermittent Fasting,
healthysquirrel reacted to cyclinglady for a blog entry
Wow! Congratulations, Ennis! I am so happy that the vomiting stopped. I have been researching intermittent fasting. Right now, I am doing just 12 hour fasts. I would like to do it a little longer, but my down fall is drinking coffee in the morning with cream. Some days I try for just plain tea and can go 14 to 16 hours. I do not plan...1 point -
Lemon Ricotta Scones
Michelle In WA State reacted to Ennis-TX for a blog entry
Fresh out of the oven for easter
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Is All Wine Gluten Free?
Scarlettsdad reacted to Scott Adams for a blog entry
There isn’t any evidence that corks would contain gluten, or wine for that matter. Even if the barrels are made in the traditional way the wines don’t contain gluten. The very last thing any wine producer would want would be wheat paste sediment floating around in there wine!1 point -
Cancer Fighting Regim
Celiac Ninja reacted to 1desperateladysaved for a blog entry
Go Ninja! The Lord can carry us when we are babies and when we are old and gray hair, and you ain't there yet!1 point -
Budesonide For Mc
moosemalibu reacted to Scott Adams for a blog entry
Keep us posted, as I know your experience getting health will help others...and get well!1 point -
Colonoscopy
moosemalibu reacted to icelandgirl for a blog entry
Oh...I'm sorry...that's rough. I still have the D...not as often...but I hate it every time. Here's hoping for a resolution to this for you and lots of normal bowel movements ahead! (Hugs)1 point -
Stay At Home Mom
Celiac Ninja reacted to 1desperateladysaved for a blog entry
I use to close my self in a relatively safe room with the little ones and have a nap. Younger ones went down for a nap in their crib every afternoon. All of my children survived and they learned many things they wouldn't have otherwise. It is hard, but so are most jobs. Hang in there.1 point -
Stay At Home Mom
Celiac Ninja reacted to icelandgirl for a blog entry
I'm sorry...that is so hard. I am also a stay at home mom and it's been tough. The days when I was running to the bathroom 10-20 times a day were so hard. I felt so bad for my kids too. I hope you find some answers soon. ((((Hugs))))1 point -
Baby #2 Born January 2014
Celiac Ninja reacted to nvsmom for a blog entry
:) Congratulations!1 point -
Baby #2 Born January 2014
Celiac Ninja reacted to LauraTX for a blog entry
My goodness, what a bumpy ride. Congrats on the new addition though, and best wishes for everything to hopefully be a little more smooth with your little darling :)1 point -
I am also on a gluten challenge at the moment, I am on week 7 and I found that after week 4 my symptoms changed a bit. After the initial severe shock to the system after having been gluten free for two months prior to the challenge, I now have a constant tummy ache, joints on fire, constant tiredness, etc, etc and general desperation!! I am very grateful...1 point
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I Need To Vent.
lexibrowning reacted to wheatisbad for a blog entry
I know exactly how you feel, one thanksgiving when I still lived with my dad he took me half way across the country to see his family and promised me he would supervise the cooking and make sure I had a plate of food to eat so I didn't just stand there and watch every one else eat on thanks giving. Low and behold, he hands me a plate of turkey, and I asked...1 point -
Up The Mountain, And Out Of The Fog
1desperateladysaved reacted to niese for a blog entry
That is awesome news, so happy for you! God is good!1 point -
Here Goes The Cold Water.
knitty kitty reacted to JordanBattenSymons for a blog entry
I found out 3 days ago and it feels like the world has something against you. Why has it made you different to everyone else. But you have to really on sites like this, these sites let people like us come together, become strong and fight back. It lets us say "no, we will not let you, I still have my life".1 point -
I'm Sorry
1desperateladysaved reacted to Greebo115 for a blog entry
I think I know exactly how you feel........and I think you know these feelings will go away soon when you get completely over that last glutening. Mine bites me in the bum like that too! xxx1 point
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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.
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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
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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.
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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:
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