Jump to content
  • 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):

Celiac Disease & Gluten-Free Diet Blogs

Listen To Your Body.

Hi, I read that some of you have problem with DH, I have very mild when I was a younger, I think it is more like a rash. My skin looks good now, but I'm aged lol. I started gluten free diet last Nov, after my 3rd pregnant my body changed so much and when I eat gluten food I would threw up and not feeling good. I heart act funny when I eat gluten food, so I keep away for good, even it's hard. Always take good vitamins when go on gluten free diet and I have to eat red meat( two time a week) and

Hannahbutterfly

Hannahbutterfly

Midol Products... Gluten-Free?

I'm thinking not.   Not only an I a celiac but I'm also lactose intolerant. It is ridiculous how sick I get when I have dairy. It feels as if I drank rotten milk or have food poisoning.   So, every time that I get my period, I get that feeling and I always take Midol with no help. If anything, it makes me even more sick to the point where I'm doubled over in pain. The Midol company said two things. The first time, they said that the factory may contain traces of wheat. The second time, the

BBrien

BBrien

End Of Withdrawl Is In Sight

I'm starting to feel better. Yeah! I think withdrawl was worse for me that how I would feel after a gluten fest. It was no fun at all. My headaches are pretty much gone and I don't feel exhausted anymore; that's probably why I'm not quite as grumpy now.   I have glutened myself already. I had an Estrella Damm Daura beer. It said gluten-free so I didn't read the label too closely until I was half done... It's still made from barley! No wonder it tasted like regular beer. I had been brac

nvsmom

nvsmom

Round 2 Withdrawl

I thought i was gluten-free for the first 1.5 weeks but discovered I wasn't. My hummus has gluten and I forgot about checking one vitamin. I was having bad headaches too... thought it was withdrawl. I guess it was pms.   I am almost 100% sure I am gluten-free now, and have been for about 4 days, and I feel just beat! My headache is back and huge and I feel so tired it seems like an effort to open my eyes after blinking. I'm a bit down too so that could be contributing to the fatigue.  

nvsmom

nvsmom

Stress Breakdown

Gonna have some down time.

GF Lover

GF Lover

Cardiologist Continued

My Doc is also looking at my one of my meds I take. He is very suspicious because my symptoms are disproportionately more severe than the lung damage would warrant. The med is Zonegran. It is the one that helps with the skin pain of fibro. And I started it when the symptoms became severe. I just remembered this very recently. My Doc told hubs during golf last night he would dig further and get with my rheumatologist to discuss it.

GF Lover

GF Lover

Wow. I Just Got My Warning.

I received my results today from my cardiologist. I have diminished lung capacity, BUT, since I have smoked my last cig a week ago, I have in effect stopped the progress of this Obstructive Lung Disease. AND it is reversible!! My heart is perfect, I was just not getting enough oxygen when stressed.   So now I keep using my inhaler and re-test in 6 months. I also start rebuilding muscle and endurance that I've lost from being sick so long. It's time to let the pain be there and go on d

GF Lover

GF Lover

Cardiac Testing Done

Well, in the last couple weeks I've had a Pulmonary Function test, an Echocardiogram, the Holter Monitor and today the stress test.   I collapsed on the treadmill so they had to do it chemically, ugh. Today the nurse doing the heart stressing said I had an episode of ischemia. Something to do with arteries and not enough oxygen.   Anyway, I see my Doc at 11:00 am tomorrow so I'll get some answers. Not really sure I want to know these answers tho.   I've taken some anxiety meds to try

GF Lover

GF Lover

All Systems Stopped

Ugh, I haven't gone bathroom in 3 days and I'm starting to get rather uncomfortable. LOL I wish it would get going again. I'm starting to get quite a distended belly, and it's gross to think about why. That's TMI isn't it?   I just realized that I hadn't checked my fibre supplements to see if they are gluten-free, and one isn't. I haven't really been gluten-free these past... 10 days or so. Just really gluten-lite. Oops. Oh well, I'll get there. It took 38 years to get here so I shoul

nvsmom

nvsmom

Down A Few Pounds

I've been gluten-free for just over a week and I'm down about 4lbs. Kind of a nice bonus. If I stopped eating a bowl of popcorn in the evenings, I'd probably be down even more.   I'll cut the popcorn to once a week and see if I can't take advantage of my damaged gut to lose a few pounds before it heals and it becomes harder to lose weight... like everyone else. LOL I guess this is the benefit of being celiac: easier to lose weight... for a while.   It probably helps that I'm not tr

nvsmom

nvsmom

First Kiddie Birthday Party, I Ate Carrot Sticks

I took my boys to a kiddie birthday party today, and it was the first time that I felt like I'm missing something. They had a wonderful cheesecake, various bowls of chips (no idea of the brands), a few other snacks, and a plate of veggies. I ate a few carrot sticks.   It wasn't awful passing up on homemade cheesecake... okay, yes it was awful but it was do able. I didn't even pout. But I can see where the limited diet will get really annoying in a year or so when this diet grows tiresome.  

nvsmom

nvsmom

The Joys Of Pregnancy...

Honestly it's not so bad being pregnant. Minus the swelling from various foods or things I drink that I have been informed are gluten free. The baby is growing quickly, seems to have growth spirts like a normal kid does out of the womb. I swear, in one week, I went from 145-150 and stayed there! I thought the scale was broken, I put the scale in the goodwill pile...everyone else who weighted themselves on the scale came up normal. Darn it! lol But, from a very very helpful website about pregnan

Celiac Ninja

Celiac Ninja

Getting Started On The Diet

Before you go off gluten, you need proper celiac testing. Celiac testing only works on a full gluten diet. (Four slices of bread a day worth of gluten.) If gluten turns out to be your problem, you won't want to re-poison yourself for two months to find out if you have celiac disease.   Tests you need: Total IgA TTG IgA deamidated gliadin (also called gliadin peptide) IgA and IgG If the total IgA comes back deficient you need TTG IgG.   Your normal doctor can order this. It's called a c

Skylark

Skylark

Acceptance Is Coming

I have so many things I need to check for gluten! Mostly vitamins and remedies. I took a Hyland's Calme/forte tablet in the middle of the night when my son kept waking me up and I was unable to get back to sleep. Within a few minutes I had a stomach ache that kept me awake... the opposite of what I was hoping for. lol   About half of my vitamins are obviously gluten-free. I'll have to look into the rest.   I really gotta look into the bacon... that's killing me. lol   I'm getting les

nvsmom

nvsmom

Starting gluten-free

I "think" I went gluten-free yesterday... not sure. This is what I ate:   m1 - 2-3 egg bake w/ red pepper, onion, spinach, spices and rice milk, 2 slices chicken bacon m2 - no snack - out of house running a field trip. m3 - 3-4 egg leftover m4 - apple m5 - bratwurst, sauerkraut, peas, cottage cheese, yams m6 - bowl popcorn and spices   Today I double checked the bacon I ate since I was going to have more at breakfast, and it has smoke flavour... that often has gluten! I guess I need to

nvsmom

nvsmom

Grrr

Today I'm just annoyed. I'm mad that I've had this for 30+ years and didn't figure it out... and that my doctor had no clue even when I went to see him about it as a child.   Grrrr.   Apparently pain is NOT normal for most people! Most people don't have pain moving or eating... I feel quite ripped off!   Grr.

nvsmom

nvsmom

It Is Celiac - Without A Doubt

Bummer.   I went for my appointment today and I was half expecting the doctor to say I was fine and then I'd have to decide to go gluten-free on my own... but with the back-up plan that I could probably abandon it some day... Nope.   I definitely, without a doubt, have celiac.   The home test I did, with not quite enough blood, gave me a very faint positive after increasing my gluten for about 2 weeks. I wasn't sure I had it but it really looked like I did. I kept saying to myself, w

nvsmom

nvsmom

Results In But Dr Won't Give Over Phone

I called my Dr's office today because I was starting to strongly suspect that my results were in but they were normal (or very close to normal) so my doctor didn't call me... he's done that before. In fact, that seems to be pretty standard practice for drs around here.   Anyway, I was right and the results were in but they won't release results over the phone. So I had to make an appointment to get them; I go in on Wednesday now.   So since the doctor didn't call me to make an appointment,

nvsmom

nvsmom

More Waiting For Test Results

I'm bad at waiting. really. I thought since I am going a little nutsy about finding out if I'm celiac, I would buy another Biocard home test and retest my IgA tTg to double check if that faint line really was a positive test. Maybe I somehow did it wrong... maybe I second guess myself too much. Anyway, the store was out of tests! they only had them for a special promotion, probably for celiac awareness month... I dunno.   Ugh. I was counting on that to help me stop obsessing. Instead

nvsmom

nvsmom

Glutening Sounds Bad

I've been lurking around the forum and I gotta say that the idea of being "glutened" after being gluten-free scares me. I'm still waiting for my blood tests, so I'm not even 100% sure I'm celiac yet (just a positive IgA tTg home test), but the symptoms I do have don't seem as bad as the symptoms many people have.   Yes, I get bloated, often to the point of looking 5 month pg again. I get stomach aches a few times a day but I can usually fake my way through them and no one has a clue. I get

nvsmom

nvsmom

The Gluten Free Fad

I have noticed within the last year or two that the gluten free diet is becoming more and more popular among non-Celiacs. It’s been on the news, celebrities are talking about it, and major restaurant chains are advertising new gluten free options. However, I have really started to doubt the sincerity of some that are embarking on a gluten free diet. I am not trying to discourage anyone from trying a gluten free diet. In fact, the more people that go gluten free the easier and cheaper my food

Angela Strand

Angela Strand

Sicca Syndrome

I've had Sicca for some years now and as it progresses your organs get less hydration. I wonder if there is a connection to the whole breathing, blacking out things. Do lungs get dryer and that could be effecting them? I guess it's time for more research. Will give me something to do while waiting for the tests.

GF Lover

GF Lover

Cardiologist

Had my appt with the cardiologist yesterday. Taking two routes. Stress test, looking for an electrical problem. Second is lung capacity testing. That one worries me most. My breathing is progressively worse, the weakness in muscles is coming on very quick. Heart rate is 56 - 60 bpm and doesn't accelerate quickly enough causing dizzyness, visual auras, un balanced and blackout. Can only walk at a leisurely pace now, no hills. Out of breath within minutes of exertion. Using an inhaler no

GF Lover

GF Lover

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Blog Comments

    • dixonpete

      I suppose it's all in how you ask the question. I just asked ChatGPT how much it would cost to resolve my gut issues the way hookworms have, and ChatGPT's response was "$15,000–$30,000/year for the most plausible UC biologic/small-molecule route, or $10,000–$40,000+/year for omalizumab-style allergy modulation".

      That assumes such medication actually worked. Considering that all I have now is a reactivity to nuts, I'm highly doubtful that a drug result would even come close to what hookworms achieve for me for free (free because I incubate).

      I completely agree that most celiacs won't get a free pass on gluten from hookworms. However, I also do believe that most celiacs would have their reactivity to gluten reduced, some greatly so, and that has value. My own reactions to gluten when I'm not on hookworms are catastrophic, completely disabling, even when the exposure is small. I'm completely free of that now. Would you seriously argue I am making the wrong choice?

    • Scott Adams

      My question to ChatGPT:
      Is purposeful Hookworm infection a reasonable treatment for those who have many food intolerance issues, including those with gluten intolerance who want to eat gluten?

      Answer:

      No — purposeful hookworm infection is not a reasonable or medically accepted treatment for broad food intolerance, gluten intolerance, or for people with celiac disease who want to eat gluten.

      There is real research behind the idea: hookworms can alter immune responses, and small celiac studies explored whether Necator americanus infection might make gluten exposure less symptomatic. But the best placebo-controlled trial found that hookworm infection did not restore tolerance to sustained gluten intake of 2 grams per day. It was associated with some symptom/quality-of-life improvements, but not enough to make gluten safe or to replace a gluten-free diet. (PubMed)

      For celiac disease, this is especially important: fewer symptoms does not necessarily mean the immune injury is gone. A person could feel better while still risking villous damage, nutrient deficiencies, anemia, bone loss, neurologic issues, infertility risks, or other complications from gluten exposure. The only established treatment remains a strict gluten-free diet.

      For non-celiac gluten sensitivity or multiple food intolerances, hookworm therapy is even less justified. Food intolerance can come from many causes: IBS/FODMAP sensitivity, lactose or fructose intolerance, histamine issues, mast-cell disorders, SIBO, bile acid problems, eosinophilic GI disease, medication effects, true food allergy, or poorly controlled celiac disease. Infecting oneself with a parasite does not diagnose or reliably treat those.

      There are also real risks: hookworms can cause abdominal symptoms, rash at the entry site, anemia/iron deficiency, eosinophilia, protein loss, and complications in people who are pregnant, immunocompromised, underweight, anemic, or medically fragile. Helminth therapy is not FDA-approved as a treatment, and outside a regulated clinical trial it is basically self-experimentation with a live parasite. (Medical News Today)

      A safer path would be: confirm whether this is celiac disease, wheat allergy, or non-celiac gluten sensitivity; check for nutritional deficiencies and inflammation; and work with a gastroenterologist/allergist/dietitian on a structured elimination-and-rechallenge plan. For someone with celiac disease who wants future gluten tolerance, the more reasonable options are legitimate clinical trials of drugs, enzymes, immune therapies, or vaccines — not deliberate parasite infection.

×
×
  • Create New...