-
Welcome to Celiac.com!
You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.
-
Celiac.com Sponsor (A1):
Celiac.com Sponsor (A1-M):
-
Get Celiac.com Updates:Support Our Content
Celiac Disease & Gluten-Free Diet Blogs
Symptoms Of Going Gluten Free And Hidradenitis Suppurativa
Hello all...My name is Shanna AKA Peach and I am new to this site. I wanted to ask about a few things concerning HS (hidradenitis suppurativa) and other symptoms I have experienced during my 1st week of going gluten free. Like many others with HS I have been to multiple doctors, have taken millions of pills and been offered surgery in an attempt to fix my HS. None of which have worked in my 17 years of suffering from this disgusting and debilitating disease. About a year ago I went gluten frGluten Free Since Feb. 2014
I have had stomach problems for as long as I can remember. I was told I had IBS & put on medication which didn't seem to help. I started putting on weight & my belly was really bloated. I was even asked if I was pregnant. I went through some very stressful times from 2009 until 2011. I lost my husband then daughter next my mother n law. I was barely eating, I was so stressed. I noticed I hadn't had any stomach pain during this time. When I did start eating regular again my legs were th(Update) Got My Blood Test In!
Hey, everyone! So, thanks to the amazing people of this site I took their advice and convinced my doctor to order my Celiac Blood Panel and she did. She was so sweet and tested me for H. Pylori before we even discussed Celiac (which - I knew it wasn't it because I was on antibiotics last month!). She listened to everything I had to say, knew that I had to be eating gluten for the tests to be accurate, and even let me show her the entire Celiac panel and offered to add them before she found oClash With The Doctors On My Colonoscopy Prep
I am normally a very shy person just wanting to blend in and willingly do what I am asked. However, when doctors told me that I needed to drink high fructose corn syrup, corn in my medications, and plastic (Mira lax) they had overstepped their power and I felt threatened. I swell up if I smell corn, so I knew I couldn't eat it. They dismissed my concern about this saying, "You can do it for the test." I set out to figure out a safe alternative for me to prep for my colonoscopy. This process took3 Weeks Today
Today marks 3 weeks since going gluten free. Overall I feel a world better!!! At first, I was sleeping really good (like the first week and a half), but for the last week and a half or so, I've had horrible insomnia. Now, I am a chronic insomniac anyway, but I was rather enjoying that week and a half of restful sleep Not sure if it's a gluten thing or not, and hoping the constant waking up/not being able to sleep, doesn't continue on as regular of a basis as of late. With that said, ovHope For A Less Challenging Gluten Challenge
The current “gold standard” tests for celiac disease include testing for celiac antibodies in patients’ blood and performing an endoscopy to obtain small bowel biopsies. In order for these tests to be accurate, one has to be eating gluten up until the time of testing. If a patient is already on the gluten-free diet when these tests are done, the diagnosis of celiac disease can easily be missed. I’ve encountered many people who have decided that they’d like to be tested for celiac disease afterCeliac Disease Autoimmunity
I first came across the term “celiac disease autoimmunity” a few weeks ago as I read summaries of the article “Risk of Pediatric Celiac Disease According to HLA Haplotype and Country” that was published in the July 3, 2014 issue of the New England Journal of Medicine(NEJM). Based on my reading and interpretation of the article, it seems that celiac disease autoimmunity is interchangeable with the more commonly used term “potential celiac disease.” Both are used to describe cases in which peopleThanks, Doc
So I went to my follow up appointment with my doctor today, 2 weeks since going gluten free. After HE said to go gluten free and it will help a great deal. So I go in, all excited, that in 2 weeks time my health has improved drastically (I was also put on Savella for fibromyalgia, and taken off my other fibromyalgia medication.) Anyway, I love my doctor, he's the only one who has ever listening to me - really listened - and he's overall good with a great bedside manner. Anyways, so I'm excDamage Assesments At 2 Years Gluten Free: Colonoscopy/endoscopy Prep
Quite possibly I suffered from celiac all of my life. I say 30+ years since I am older than that and can recall bloating and fatigue beginning undeniably at age 19 after a bout with mono-nucleosis. I have been working with my physicians to relieve my symptoms naturally and attempting to get to the roots of problems and solve them since realizing I had a gluten problem about 2 years back. I haven't been too interested in Medical doctors for years since they could make my eczema go away, but iCoincidence? Starting To Think Not...
So I am starting to think that several of the things I have beend diagnosed with, and/or are struggling with (including severe insomnia) are directly tied to gluten. Just over a week in, my insomnia has gotten noticeably better. My fibromyalgia pain has gone from constant pain to, seriously, being decreased by over half (granted, I am also on a new fibro medication, but whatever it is is working, so I'm not going to question it!) I have noticed my focus has been slightly better, although itStay At Home Mom
With two kids to tend to, glutened by who knows what, and allergic to other stuff, I am finding it hard to survive. At night I have horrible nightmares, have had since I was a kid, but the glutening makes them worse. Also having heart palpitations, tightening, lethargy. Very tired all over as well. The last few weeks the glutening has damaged my gut and I guess I am consuming things that make it swell normally, so going to the restroom is defiantly difficult and painful. I'm loosing quite a lot7 Days Down... A Lifetime To Go!
Well, 7 days down... a whole week gluten free... and I'm feeling hopeful. Good sign, considering I really thought I'd be down in the dumps over this (thank you to this forum and the book 'Living Gluten Free for Dummies by Danna Korn for the push in the hopeful direction!) We are making our very first grocery store trip this Friday, since my diagnosis. Surprisingly, I'm kind of excited. I think the prospect of feeling better (which I am already starting to feel MUCH better) is contributGetting A Sleep Study Done!
I am getting a sleep study done tonight. My Oncologist referred me for one. I have had chronic insomnia since I was 15 years old. I am now 34. My sleep is awkward, and I go through phases where I literally can't sleep at all (despite being on sleep medication prescribed by my psychiatrist), or I will sleep too much. I also have very little energy. My partner, who works in the medical field, believes I have sleep apnea. I'm interested to finally be having a sleep study done because this wackyHere We Go!
Here it is, July 2014. I have been going through the run around since 2009 with possible celiac and/or gluten intolerance diagnosis. Over the years, I have not gotten a solid answer; and in the meantime other health issues had taken front seat to my possible gluten problems. July 3, 2014: Diagnosis received. So far so good with being gluten free. Today will be day #4.Gluten Intolerance Doesn't Exist?!
Last night, I heard David Sax speak to a packed crowd in Los Angeles to promote his new book, "The Tastemakers: Why We’re Crazy for Cupcakes But Fed Up With Fondue." As a Toronto-based journalist who's written for publications such as New York Magazine, Vanity Fair, the New York times, NPR and GQ, David's won a James Beard award for Writing and Literature, has written before on food topics and has credibility as a food writer. David's topic was food trends, in this case why Angelenos love Kogi BBaby #2 Born January 2014
Well, my sweet hubby and I had another baby, Surprise! its a girl. ? Yes, we didn't know until month 8. Doctors told me she was in serious danger because I am Rh-, that is O- blood. I chose not to do the rohgam. It is protein based and I have numerous allergies including to pain meds. When I had cancer I had seizures while the nurse was giving me retuxin, which is animal proteins. I seizured twice on the table and they had already given me banderol. They pulled it out and doped me up with moBumps In The Road: Food Intolerances
About 1 1/2 years ago I did a food antibody test to see if I could find some safe foods for me to use and any I should not use. The tests searched for Igg and IgA antibodies made by the body to combat foods that it evidently thinks are invading it. The tests showed me several surprises: Buckwheat threatened my body the hardest! (I was already off gluten.) 49/60 foods my body interpreted as problems. Surprisingly, this left a few of my favorites which I could eat. Since, I had so many iGluten-Related Neurologic Symptoms In Children
There is a well-established relationship between celiac disease (and non-celiac gluten sensitivity) and the development of neurologic problems in adults. According to Dr. Marios Hadjivassiliou, a neurologist in the UK who is one of the world’s experts in this area, up to 50% of adults with newly diagnosed celiac disease have signs or symptoms of neurological problems. I have personally experienced a peripheral neuropathy (nerve damage) as a result of celiac disease and it was my neuropathy thatI'm Back!:)
Well, I guess I haven't been on since around last Fall or sometime around there. Either way, it's been a while! I just finished my Sophomore year of college with a 4.0 and am finally back home for the summer! Some of you may have heard about us on the news recently actually... we had quite a lot of rain a few weeks ago that basically destroyed half the town. My house is okay though! The roads, however, are not. Last time I was on here I was still very much struggling with avoiding all thingWeek 2: Monday, May 5, 2014
Okay so, where do I begin. On Tuesday, April 29, I went to see my naturopathic doctor for the first time. We talked about skin issues and food sensitivities, and he mentioned that a patient of his had rosacea and was tested for food sensitivities. After being tested positive for yeast/wheat sensitivities and giving both up..his rosacea cleared up. I didn't think too much of it at first..until after my dinner. I ate steam fresh brown rice (no additives or sauce) mixed with steam fresh vegetablesThe Beginning Of The End Of Celiac Reigning In My Life. Two Years Of Progress.
When I was 19 I fell ill with mononucleosis. From than on I carried what seemed like 100 lbs of fatigue on my back. I tried many natural ways to relieve and energize me. You see that I tried to take care of a large family. Yet, sometimes it seemed that it took more energy to make a meal than I got out of the meal. I felt tired, but the doctor said, "Of coarse you are, you have a big family to care for." I often taught home school, in my living room, lying on the couch. While sitting up, I fell a-
Get Celiac.com Updates:Support Celiac.com:
-
Celiac.com Sponsor (A17):
Celiac.com Sponsor (A17):
Celiac.com Sponsors (A17-M):
-
Blog Comments
-
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 we can triangulate from clinical trials and community data:
Clinical Trial Evidence
In controlled studies, 0% achieved true full remission when challenged with sustained moderate gluten (≥2 g/day or short bursts of 16 g/day).
Even with 20–40 N. americanus, villous atrophy still occurred under those challenges.
However, around 30–50% of participants did experience softer symptoms and improved quality of life at micro-exposures (≤200 mg/day).
Conclusion from trials: Hookworms help reduce symptoms and inflammatory markers at small exposures, but do not produce full clinical remission under regular gluten intake.
Community / Self-Reported Outcomes
Among self-treating celiacs, reports of “functional remission” exist — meaning hosts can eat gluten without noticeable symptoms.
Based on helminthic therapy support groups and survey-type accounts, this looks like a minority (maybe 10–20%) of long-term hosts.
However, these cases are controversial because:
Some people may be asymptomatic but still sustaining silent mucosal damage.
Community reporting tends to over-represent strong responders.
Putting It Together
Clinical remission (no symptoms + no villous damage on gluten diet): Essentially 0% proven in trials with 20–40 worms.
Symptomatic remission (no symptoms, but mucosal injury uncertain): Maybe 10–20% of self-reported hosts claim this.
Partial benefit (improved tolerance, less severe symptoms, better quality of life, but still need a gluten-free diet): This is the most common outcome — probably 30–50% of hosts.
👉 So if we phrase it plainly:
The average celiac hosting 20 hookworms won’t reach full remission. A small minority (≈10–20%) say they can eat gluten freely without symptoms, but this is not supported by trial evidence and carries risk of silent damage. For most, worms act as a safety net for cross-contamination rather than a cure.Would you like me to give you a visual chart (clinical trial vs. self-reports: full remission, partial, none) so you can see the proportions side by side?
-
8 hours ago, miguel54b said:Thanks, I am desperate to find a cure too.
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 all.
My theory all this is because of the different root genetics of the individual's celiac disease. My cousin is also celiac, and I'm highly confident he would be put in remission with hookworms like I was, but he has no desire to try them, so I'll never know if I was right.
- John Scott and Scott Adams
-
2
-
