Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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
    eNewsletter
    Donate

A Miracle?!? - Change In My Reaction To Gluten


lucia

Recommended Posts

heidi g. Contributor

ohh ok. Thank you skylark that was what answer i was looking for. And thanks for everyone else too. Im starting the diet that i made. It treats the leaky gut and is of course, gluten free. Hopefully it works!


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



  • Replies 91
  • Created
  • Last Reply
IrishHeart Veteran

ohh ok. Thank you skylark that was what answer i was looking for. And thanks for everyone else too. Im starting the diet that i made. It treats the leaky gut and is of course, gluten free. Hopefully it works!

Heidi,

Here is a great explanation of the difference between a wheat allergy, gluten intolerance and Celiac Disease.

Open Original Shared Link

Please read it--- as it is very obvious that you are confused about it (as many folks are!) There is technically no such thing as a "gluten allergy", but that is what people call it. It is the AUTOIMMUNE component of celiac that makes it a whole different bird than intolerance/ sensitivity.

I was going to suggest getting copies of your reports but Karen has covered that. We all learned the hard way that we need to keep copies for ourselves.

This is what I have been trying to stress to you because yes, healing a leaky gut is a good thing, but if you are dealing with Celiac, you have other things to consider. Okay? Okay! :)

Best wishes to you.

IrishHeart Veteran

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: Open Original Shared Link I just have a strong feeling that i don't have celiac disease. I just don't get why- Maybe im just too hopeful

This is not clear at all....after the biopsy, what did the doctor SAY? Is it Celiac or not? Being optimistic is a wonderful trait (hey, I am an optimist!)-- but you also must be realistic. If you actually do have Celiac, that needs to be addressed with follow-up care from a knowledgeable doctor.

Okay, good luck!

Skylark Collaborator

question though- I have found some evidence to the claim that antibiotics can cause damaged villi. Here is one of the sites: Open Original Shared Link I just have a strong feeling that i don't have celiac disease. I just don't get why- Maybe im just too hopeful

Waitamimute. You don't trust Wikipedia as a reference and you're believing that? Luv, they're trying to sell you snake oil and spouting pseudo-science to make it look believable. There is so much dangerous misinformation on that web page I can't even begin to list it. Haven't you had any gastrointestinal physiology in medical school?

Lisa Mentor

A complication of anorexia and/or alcohol abuse, through lack of absorption can atrophy the villi as well.

domesticactivist Collaborator

Here are a couple more points of clarity:

The question was asked about candida and antibiotics. While these things can damage the gut lining, they do not create the same kind of damage to the villi that celiac autoimmunity does.

Also, someone said there is no such thing as a gluten allergy. Actually, there is. However, that is a different thing from celiac disease. In a gluten allergy, there will be IgE reaction to gluten, and the immune system attacks the gluten itself. In celiac disease, there is an autoimmune reaction where the body gets triggered into attacking the villi in the small intestine, and/or produces dermatitis herpitiformis on the skin. This is different than what we normally think of as an allergy.

Skylark Collaborator

Actually, "gluten allergy" would be a misnomer. It's "wheat allergy" and the allergic reaction is to different protein fragments in the wheat kernel than the immune system tends to choose for celiac. Also, people with a wheat allergy can sometimes eat rye and barley.

Another thing that can cause temporary celiac-like villous blunting is severe illness from rotavirus infection. It's accompanied by severe illness, fever and long-lasting watery diarrhea so you'd know if you had it. The villous atrophy is temporary. Biopsies should not be performed when you're feeling ill.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

Also, someone said there is no such thing as a gluten allergy. Actually, there is. However, that is a different thing from celiac disease. In a gluten allergy, there will be IgE reaction to gluten, and the immune system attacks the gluten itself. In celiac disease, there is an autoimmune reaction where the body gets triggered into attacking the villi in the small intestine, and/or produces dermatitis herpitiformis on the skin. This is different than what we normally think of as an allergy.

Not to be picky, but saying "gluten allergy" is technically incorrect.

Most people use this phrase to explain their condition, rather than say "I have celiac which is a potentially fatal autoimmune disease that..."....because by then, the person has a glazed look in the eyes that says " blah blah blah sooo not listening anymore...":lol:

When someone asks, so you have a gluten allergy? I say, it's not an allergy--like an "ah-choo" kind of thing :) Gluten eats my intestines and affects my brain and causes a whole bunch of problems. It's like kryptonite to me. And Supergirl can't fly if kryptonite gets in." That usually gets someone's attention and prompts more questions and then, I explain--if they really want to know more.

From Essentials of Gluten Sensitivity (and found in Danna Korn's Living Gluten Free )

"Gluten sensitivity is a physical sensitivity to gluten. The condition is not easy to define, because these sensitivities come in a variety of forms. Think of gluten sensitivities as falling somewhere on a spectrum, ranging from allergy to disease.

Allergy: Actually, there’s no such a thing as an allergy to gluten, but you can have allergies to the things that contain gluten: wheat, rye, and barley. In fact, wheat is one of the most common allergens.

Gluten sensitivity is a physical sensitivity to gluten. The condition is not easy to define, because these sensitivities come in a variety of forms. Think of gluten sensitivities as falling somewhere on a spectrum, ranging from allergy to disease.

Gluten sensitivity and intolerance: Often used interchangeably, the terms sensitivity and intolerance basically mean that your body doesn’t react well to a particular food and you should avoid it. People who fall in this range have a response to gluten very similar to a celiac response and may indeed have celiac disease — maybe. Here’s where things get fuzzy:

Some people diagnosed with gluten sensitivity actually have celiac disease, but their testing was done improperly or was insufficient to yield conclusive results.

Some people may not have celiac disease — yet — but if they continue to eat gluten, may develop it.

Some people may not have celiac disease and may never get it. But they do have sensitivity to gluten, and their health improves on a gluten-free diet.

If you test negative for celiac disease, yet your symptoms go away on a gluten-free diet, you probably have some form of gluten sensitivity. (Or, you may have celiac disease, with a false negative test result.)

Celiac disease: Celiac disease is a common (yet often misdiagnosed) genetic intolerance to gluten. Triggered by eating gluten, and the immune system responds by attacking the gluten molecule, in so doing, it also attacks your body cells. This autoimmune response results in damage to the small intestine, which can cause poor absorption of nutrients."

Hope this helps you, Heidi. :)

heidi g. Contributor

Oh yes all this has helped me! I need to get a copy of my reports and tests because he did not tell me what i had. He did not clarify anything about an allergy to gluten or if I had Celiac Disease. After the endoscopy and Colonoscopy he said everything appeared normal. Then a few days later his nurse called to tell me to try a Gluten free diet. I said "as like for Celiac disease" and she said possibly. They did not tell me anything else. I am calling first thing Monday to make an appointment and get my test results and to talk to him because i am so confused!

kareng Grand Master

Oh yes all this has helped me! I need to get a copy of my reports and tests because he did not tell me what i had. He did not clarify anything about an allergy to gluten or if I had Celiac Disease. After the endoscopy and Colonoscopy he said everything appeared normal. Then a few days later his nurse called to tell me to try a Gluten free diet. I said "as like for Celiac disease" and she said possibly. They did not tell me anything else. I am calling first thing Monday to make an appointment and get my test results and to talk to him because i am so confused!

Don't just let them tell you what the path or blood says. Get actual copies. If you have an appointment, they will likely give them to you then if you ask (and remind them at the end of the appointment)

Write down your questions & take with you. Don't expect that the doc knows alot about Celiac or intolerance so you can't debate the "will I heal?"

heidi g. Contributor

Oh and I forgot to mention this! I was considered Anorexic due to a fear of eating after i deveolped Gastritis after my antibiotic. I went from 180 pounds (I had a child) to 123 pounds in a year. Then when i started eating again i gained some and had digestion issues still. Not as bad as before though. Now im at 145 and i gain weight, then lose weight. Sometimes i dont eat and sometimes i do. I mean who wants to eat when they feel like they have the stomach flu. It's affecting my classes and my anxiety is through the roof! Im going to take a year off to get a handle on what is wrong with me

Lisa Mentor

Oh and I forgot to mention this! I was considered Anorexic due to a fear of eating after i deveolped Gastritis after my antibiotic. I went from 180 pounds (I had a child) to 123 pounds in a year. Then when i started eating again i gained some and had digestion issues still. Not as bad as before though. Now im at 145 and i gain weight, then lose weight. Sometimes i dont eat and sometimes i do. I mean who wants to eat when they feel like they have the stomach flu. It's affecting my classes and my anxiety is through the roof! Im going to take a year off to get a handle on what is wrong with me

Heidi, pregnancy is a very common trigger for Celiac. Coupling that will eating difficulties would certainly support symptoms of Celiac or at the least intestinal distress.

Whatever the outcome of your testing, I would recommend that you respect that body and eat healthy every day. You have quite a few fans here who will be glad to walk you through a healthy and nutritious diet. If you don't you might get sicker and sicker. And partying, if you do (I remember 21)) on an empty stomach, could very well give you those flu symptoms or worse.

Tomorrow is a new day! :)

Lori2 Contributor

Irish Heart, you gave a reference to the American Celiac Disease Alliance where they state the following:

Takala Enthusiast

Homeopathy is not going to help patients with celiac avoid an autoimmune reaction if they eat wheat. other than the placebo effect.

Mass denial of the possibility of recovery from celiac, however slim, on this board is unfortunate.

This is one of the few places in the web-o-sphere where it is acceptable to be on a gluten free diet, and be stringent about it.

Mass "Denial" - Likely because there's so many people that are looking for any sort of excuse whatsoever to cheat or regress on their gluten free diets, because sticking to the diet can be extra work, and gluten is addictive for them, and they don't really need that sort of "encouragement" to try to see if they can cheat.... we've all heard the stories or experiences of people with 1st degree relatives and/or close friends who have symptoms and drive them nuts because they won't get tested, or even worse, they did get tested, and they don't take it seriously and cheat on the diet anyway. AND they COMPLAIN they're FEELING SICK all the time, too! :ph34r: AND there are so many people trying to huckster these blasted useless over the counter quack "cures" or "ameliorations" that cost a lot of money $$$ and will supposedly let people "cheat" socially out at restaurants, etc. Where does one draw the line ?

We can't even get accurately diagnosed or taken seriously by many people, at large and in the medical profession. And now you wish for acceptance of remissions... not going to be likely to happen. Maybe for a very few people with chronic infections that were cured. Or for the less sensitive gluten intolerants, as opposed to Officially Diagnosed Celiacs. But most.... they eat it, they're gonna get sick. They may or may not acknowledge just how sick they are.

It's been around 8 years for me, and I am becoming more careful as my sensitively slowly increases. I would guess from my ability to eat most things other than gluten (and I feel very sorry for so many here who have these huge lists of "also can't tolerate" - what a pia!) and my lack of having to be on a lot of medications and my basic gut function that I'm not doing too badly, but I doubt very much I can ever cross back over to the other side. And I had a chronic infection maybe 9 - 10 years ago I was treated for with a round of stronger antibiotics, and it finally ended. It Is Gone. I Will Not Tempt Fate On That. There really isn't any reason I would be having a gluten reaction at this point, other than there really is a permanent malfunction going on here.

edited to add stuff kept forgetting to put in :rolleyes: some sort of record for screwing up slashes in brackets :blink:

Just wondering what the rest of you think. Can I expect my neuropathy, vitiligo and osteoporosis resolve now that I am gluten free?

If someone who was as bad as I was with neuropathy can recover mostly (altho it took years) then I would not let other naysayers tell you that it's impossible. I don't have any experience with vitiligo so cannot comment. I think my bones have at least slowed down their rate of thinning (I remember actually being horrified at a scan I saw over 20 years ago, because as a layperson even I could tell that somebody's c spine wasn't supposed to look like that, and I can compare it to one take about 10 years later), but I supplemented religiously with multivitamin and calcium/mag all these years no matter what study said they didn't do any thing, and I get weight bearing exercise.

I don't have an official diagnosis of celiac, either. Whatever it was, was, imo, causing malabsorption problems because I kept having so many kidney problems, which stopped, and my hair grew and fingernails improved so much after going gluten free.

mushroom Proficient

Heidi, I have only just read this topic through today, and I am sorry for what you are going through. Getting a proper diagnosis is so difficult which is why so many of us are undiagnosed or self-diagnosed. But nevertheless, we have come to accept that we must eat gluten free and that it would not be in our interests to cheat on the diet or think of ourselves as 'recovered.'

It has been said that accepting a diagnosis of celiac is like going through the five stages of grief:: Denial, Anger, Bargaining, Depression and Acceptance.

think I am seeing those stages as I have read through your posts. It is not easy to accept, especially socially at your age, that you will be denied all lthose glutenous foods we all loved, so we can deny it, get angry (with ourselves and others) about it, try to cut a deal, get depressed, but in the end we have to come to the point of accepting it and get on with it It sounds to me like you are going through all these stages at once :o But you are doing well and heading down what I think is a good path now. Get all the facts, get the copies, talk to your doctor, get more testing if necessary, but it sounds to me like you need to be rid of gluten to lead a healthy life. It is really not as daunting as it at first seems, especially nowadays when there is so much more awareness of what it means to eat gluten free (despite alll the misinformation that abounds).

Good luck to you with your doctor, with your schooling, with your career (whatever you end up doing, (but I agree with a pp who says it should be something YOU want to do, not something your dad wants you to do) and with your health. :)

domesticactivist Collaborator

I was going to respond with passages but my computer is on the fritz so I'm on my phone. Suffice to say, my reading of the book Healthier Without Wheat this week has evolved my perspective on the whole intolerance-allergy-celiac thing. I'd be interested to know your thoughts on the book.

IrishHeart Veteran

In their opinion, gluten intolerance symptoms are transient and do not cause permanent damage. I am gluten intolerant, not celiac—I do not have either one of the celiac genes. However, I would consider my long-term peripheral neuropathy and vitiligo to probably be permanent. They also state that “persons with a wheat allergy or gluten-intolerance usually do not have severe intestinal damage, and therefore are not at risk for these nutritional deficiencies” caused by malabsorption. I would suggest that my severe osteoporosis contradicts this.

Just wondering what the rest of you think. Can I expect my neuropathy, vitiligo and osteoporosis resolve now that I am gluten free?

I agree with what TAKALA has posted above and will add my two cents. :D

I am both a realist and a raging optimist :) (yes, that is possible!) who thinks that many of the symptoms I have as a result of gluten will either reverse, subside or at least, be more tolerable. I have dozens, some debilitating, yet I have had many diminish and I keep in mind that it may take YEARS for my body to "right itself" as I went undiagnosed for so long. That is not easy to do when every day is a struggle, but I keep my eyes on the prize. ;)

There are many on this board who have had nearly all of their symptoms disappear and this is what I hang my hope on. So many gracious people who have told me their stories and who encourage others to stay focused and patient. My doctor also urges me to be patient. He says some neuropathy may not resolve, but then again, many report that it does. Mine has LESSENED after 10 months, and I was in burning hell, so I remain optimistic.

I find the wording in many sources of information about the "gluten sensitivity spectrum" to be somewhat "fuzzy" (some would use the word contradictory :lol: ) when it comes to symptom resolution.

Whom do we believe? Not sure :unsure: myself.

The truth is, there is so much they still do not know about this "thing".

IMHO, gluten --whether you have a sensitivty, an intolerance or celiac--can wreak havoc. I think the inflammatory response from gluten intolerance is the underlying cause for many of the autoimmune diseases and "-itises" we all develop from it. (gastritis, thyroiditis, arthritis, vagninitis, chostochondritis, pancreatitis, sinusitus, blepharitis, etc...)

As far as the "celiac genes" go, the jury is still out on those.

Many people have diagnosed celiac and they have neither the DQ2 or DQ8 gene. There are several on this board, in fact-- and my doctor was stunned when one of his patients had celiac with neither of those genes. So, even THAT is not reliable as a tool for "excluding celiac".

The research that is ongoing tells us more and more. Dr. Fasano and colleagues published a report last Spring proving that gluten sensitivity causes many symptoms once attributed solely to celiac and intestinal damage. I think he's the man who seems to be on the right track for figuring this puppy out ! :)

Whether those symptoms are transient or permanent may vary from person to person.

Depending upon was CAUSED the symptoms will determine what reverses or resolves. If the neuropathy was caused by a B-12 deficiency for example, and the deficiency is addressed, the neuropathy should clear. Several factors contribute to osteoporosis (as you probably know) and so, those issues need to be addressed IN ADDITION to removing the offending gluten. Many claim that osteoporosis can be reversed or at least halted with proper diet, cal/mag supplementation and exercise or in severe cases, with medication. I had a rapid decline in bone density myself in just one year, so I am hopeful that will stop.

While gluten sensitivity is a contributing factor in many of these symptoms, there may be other reasons why they develop as well. Eliminating gluten is part of the solution to resolving health problems, but addressing the other factors is also necessary. I took out gluten, and yes, that stopped the autoimmune attack, but I had multiple vitamin/mineral deficiencies and B-12 and Folate anemias that needed to be supplemented.

Just FYI RE: vitiglio....I read this interview with Dr. Fasano that mentions vitiglio if you are interested. The interviewer has it herself and tells him that hers is resolving on a gluten-free diet. :)

Open Original Shared Link

And most importantly....

You will notice the wording from that article excerpt you posted above uses the word "USUALLY" ....as in "usually does not cause" intestinal damage ?? This must mean that SOMETIMES it does. <_< This type of careful wording is used in publications because quite frankly, it seems no one really knows for sure what the hell is going on with gluten!! I know this, it is not the healthy grain humans once thought it was because it has been modified and tinkered with so many times.

That's a long answer to your question :rolleyes: (sorry) but IMHO, I think that IN TIME, many symptoms CAN reverse. Many "success stories" on here are far more encouraging than any of the doomsday "literature" that circulates on the internet.

Personally, I choose to believe that in time, I can resume a healthy life once more. ;) But in my case, I would never, ever put that poison in my body again, regardless of what "they" say about celiac being "cured". To fully understand the nightmare this has caused me, you would have to have walked (or should I say staggered) in my shoes and suffered the drastic consequences of celiac to understand why I doubt this concept.

Best wishes to you!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,289
    • Most Online (within 30 mins)
      7,748

    Chanel Moolman
    Newest Member
    Chanel Moolman
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Dora77
      Sorry for the long post. I’m 18, and I was diagnosed with celiac disease and type 1 diabetes (T1D). My transglutaminase IgA was >128 U/mL, EMA IgA positive twice, and I’m HLA-DQ2 and DQ8 positive. I’ve been completely asymptomatic since diagnosis, even when I cheated with gluten sometimes in the past and used to eat out(2-5 years ago) I don’t get the typical celiac reactions, which makes it really hard to know when (or if) I’ve been glutened. But for the past year, I’ve been the most strict with my diet, and that’s also when a bunch of new issues started. I eat completely glutenfree, never eat out, dont eat food that says „may contain gluten“.   Current Health Problems • Floating, undigested stools for over a year now. Dont think its related to celiac as it was like this since im 17 and not 13-16( i got diagnosed at 13). • Chronic back pain started gradually, worsens with movement, lots of cracking/popping sounds. Been ongoing for a year now. First noticed in the gym. • Abdominal bulge on the right side, not painful but seems to be getting slightly bigger. Doctor didn’t find a hernia on ultrasound, but it was done lying down (I’ve read those can miss hernias). Noticed it like 6 months ago, couldve been there longer. • extremely dry and mildly swollen hands (this started before I started excessive hand-washing), and bloated face. • Signs of inattentive ADHD (noticed over the past 3 years), now combined with severe OCD focused on contamination and cross-contact. • Growth/puberty seemed to started after going gluten-free. Before that I was not developing. Dont know if any of these are because of celiac as my dad doesnt have those and he is a lot less strict gluten-free then me. I also had pancreatic elastase tested four times: values were 46 (very low), 236, 158, and 306 (normal). Gastroenterologist said one normal value is enough and I don’t have EPI. Family doctor prescribed Kreon anyway (after I pushed for it), and I just started taking 1 capsule (10,000 units) with meals 2 days ago, but couldn‘t see effects yet because I’ve been constipated the last few days. Maybe because of thyroid. I don’t have Hashimoto’s. No thyroid antibodies. But I took levothyroxine for slightly low FT4 levels. My thyroid levels fluctuated between borderline low and low-normal. And recently lowered my dose so that may have caused the constipating. I probably didn’t need it in the first place, and am thinking about stopping it soon.   Current Diet Right now, I only eat a very limited set of “safe” foods I prepare myself: • Gluten-free bread with tuna or cheese • Milk and cornflakes • gluten-free cookies/snacks • Bananas (the only fruit I trust right now) I rarely eat other fruits or vegetables, because I’m scared of contamination. My dad, who also has celiac but doesn’t care about CC, buys fruits, and he might’ve picked them up right after handling gluten bread. That makes me feel unsafe eating them. Even fruit at stores or markets feels risky because so many people with gluten on their hands touch them.   My Home Situation (Shared Kitchen) We’re a family of 5. Only my dad and I have celiac. He eats glutenfree but doesn’t care about CC and sometimes (but rarely) cheats. My mom and siblings eat gluten bread at every meal. My mom is honest (so if i ask her to be cautious, she most likely would try to), but doesn’t seem to understand how serious celiac is. She: • Stopped using gluten flour • only cooks gluten-free meals (but they still heat up gluten bread and also cook gluten noodles) • Keeps separate butter/jam/jars for me • Bought me a stainless steel pan Bu we didn’t replace old wooden utensils, cutting boards, or other pans. The new they bought me pan was even carried home in a shopping bag with gluten bread in it, which triggered my OCD. It also has a rubber handle and I’m scared it might still hold onto gluten. Even if it’s washed well, it’s stored next to other pans that were used for gluten food/bread. Our kitchen table is used for eating gluten bread daily. My mom wipes it but not with soap. I’m scared tiny particles remain. If she made gluten-free bread dough on a board at the table, I’d still worry about cross contmaination contamination even with something under the dough and on the table as at one point the dough would probably touch the table. So I stopped eating anything she makes.   I know OCD is making it worse, but I can’t tell how much of my fear is real and how much is anxiety. Examples: • I wash my hands 20–30 times a day — before eating, after touching anything at home or outside, after using my phone/laptop. • I don’t let others touch my phone, and I’m scared to use my laptop because friends at school or my brother (who eat gluten) have touched it. And it annoys me a lot when others touch my stuff and feels like it got contaminated and is unsafe instantly. • I stopped eating while using my phone or laptop, afraid of invisible gluten being on them. • I wash my hands after opening food packaging (since it was on store cashier belts where gluten food is placed). • I avoid sitting anywhere except my bed or one clean chair. • I won’t shake hands with anyone or walk past people eating gluten. • At school, when switching classes, I wash my hands before getting out my laptop, again before opening it, etc. • I open door knobs with my elbows instead my hands   Job Concerns (Powder Coating, Sandblasting, Etc.) I’m working a temporary job right now that involves: • Powder coating • Sandblasting • Wet spray painting • Anodizing There’s also a laboratory. I don’t need this job, and my OCD makes me believe that dust or air particles there might contain gluten somehow. Should I quit?   Doctors Haven’t Helped My family doctor told me: “Asymptomatic celiac isn’t serious, if you have no symptoms, your intestines won’t get damaged, so you don’t need a gluten-free diet.” I knew that was wrong, but he wasn’t open to listening. I just nodded and didn‘t argue. My gastroenterologist (who’s also a dietitian) said: „If your antibodies are negative, there’s no damage. It might even be okay to try small amounts of gluten later if antibodies stay negative.“ Also said, pepper that says “may contain gluten” is fine if it only contains pepper. She was more informed than my family doctor but didn’t seem to fully understand celiac either.   Questions I Need Help With 1. Is it realistically safe to eat food my mom cooks, if we get separate pans/ and boards even if gluten is still used in the same kitchen? There will always be low risk of cc chances like that she will still touch stuff that was touched by her and my siblings after they ate gluten. And as there are gluten eaters in the house and she also prepares and eats gluten. So would opening the fridge then getting the food and touching the food be okay? So basically what i am doing, washing my hands multiple times while preparing food, she would only wash it once before, then touch anything else (for example water tap or handles) that were touched with gluteny hands, then also touch the food. I dont know if I ever could feel safe, I could try telling her how important cc really is. And I trust her so she wouldnt lie to me then be careless about cc, but idk how safe it really can be if she and everyone else keeps eating gluten and touching stuff in the house after eating. 2. Do I need to worry about touching doorknobs, fridge handles, light switches, etc. that family members touched after eating gluten? What about public places like bus handles or school desks? Or like if i went to the gym, I would be touching stuff all the time, so there will be small amounts of gluten and those would get transferred on my phone if I touch my phone while in the gym. But I want to knos if it would be enough to do damage. 3. Is an endoscopy (without biopsy) enough to tell if my intestines are healed? I’d pay privately if it could help and if i dont get a refferal. Or do i need a biopsy? 4. Could my job (powder coating, sandblasting, etc.) expose me to gluten or damage my intestines through air/dust? 5. Do I need certified gluten-free toothpaste, hand soap, shampoo, or moisturizer? (For example: Vaseline and Colgate don’t contain gluten ingredients but say they can’t guarantee it’s gluten-free.) 6. Is spices like pepper with “may contain traces of gluten” safe if no gluten ingredients are listed? Or does everything need to be labeled gluten-free?  7. Is continuing to only eat my own food the better choice, or could I eventually go back to eating what my mom cooks if she’s careful? 8. is cutlery from dishwasher safe if there are stains? Stuff like knives is used for cutting gluten bread or fork for noodles etc. I often see stains which i dont know if its gluten or something else but our dish washer doesnt seem to make it completely clean. 9. I wash my hands multiple times while preparing food. Do i need to do the same when touching my phone. Like if i touch the fridge handle, I wash my hands then touch the phone. I dont eat while using my phone but i leave it on my bed and pillow and my face could come in contact with where it was.  10. Do i need to clean my phone or laptop if theyve been used by people who eat gluten? Even if no crumbs fall onto my keybaord, i mean because of invisible gluten on their fingers. 11. Does medication/supplements have to be strictly glutenfree? One company said they couldn‘t guarantee if their probiotics don’t contain traces of gluten.  12. I had bought supplements in the past, some of them say glutenfree and some of them dont(like the brand „NOW“ from iherb). I bought them and used them when i wasnt washing my hands so often, are they still safe? As I touched and opened them after touching door knobs, water taps etc. It was like a year ago when i bought those and even though i was eating gluten-free, I never worried about what i touch etc. I know this post is long. I’m just extremely overwhelmed. I’m trying to protect myself from long-term health damage, but the OCD is destroying my quality of life, and I honestly don’t know what’s a reasonable level of caution anymore. Thanks for reading.
    • lmemsm
      I've been making a lot of black bean brownies lately because it's one of the few gluten free dessert recipes that actually tastes palatable.  I've also seen chocolate cake recipes with black beans.  Someone mentioned a cookie recipe using lentils in place of flour.  Just wondering if anyone's run across any tried and true recipes using beans, lentils or peas for desserts?  I've seen a lot of recipes for garbanzo flour but I'm allergic to garbanzo beans/chickpeas.  Was wondering if adzuki or pinto beans might be useful in replacing some or all of the flour in baking.  Since gluten free flours can be crumbly was hoping the beans might help produce a better, less crumbly consistency.  Any recommendations for recipes?  Thanks.
    • lmemsm
      I've seen a lot of recipes for chia pudding, so I decided to make some with chia, water, cocoa and honey.  Didn't like the taste, so I added ground sunflower and ground pumpkin seed to it.  It tasted okay, but came out more like frosting that pudding.  I used to make pudding with tapioca starch, milk powder, water and sugar.  It came out very good but I haven't figured out what to use to replace the milk powder to make it dairy free.  Most starches will work in place of tapioca starch but quantity varies depending on the type of starch.  If I didn't add enough starch to get a pudding consistency, I'd add gelatin as well to fix it.  Avocado and cocoa makes a good dessert with a pudding like consistency.  Unfortunately, I have a bad reaction to avocados.
    • lmemsm
      Seems like when I find a gluten free product I like, the producer stops manufacturing it and then I have trouble finding a new gluten free source for it.  What's worse, I've been contacting companies to ask if their products are gluten free and they don't even bother to respond.  So, it's making it very hard to find safe replacements.  I was buying teff flour at nuts.com and they no longer carry it.  I noticed Naturevibe has teff and soy flour.  However, I can't get a response as to whether their flours are safe for someone with celiac.  Can't get a response from Aldi if their peas are safe for someone with celiac either.  I know Bob's Red Mill has teff flour but was hoping to get a large quantity.  I've been using up the 20 ounce Bob's Red Mill teff flour too quickly.  Does anyone know of a good source for teff or soy flour?  Any recommendations where to get gluten free beans, peas or lentils?  I found some packages of gluten free beans at Sprouts but not much variety.  I've also been looking for lentil elbow macaroni and it seems like no one is making that now that Tolerant was bought out.  Any suggestions for safe sources for these types of ingredients.  Thanks.
    • chrish42
      All I can say is this site is great!
×
×
  • Create New...