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Is There Any Other Way!?


Kirstie

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Kirstie Apprentice

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to! :(

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover :( I really don't want to suffer like that for 6 weeks!

Thanks

K x


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ravenwoodglass Mentor

Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.

StephanieL Enthusiast

Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.

Kirstie Apprentice

Sounds like you are in Australia, yes?

If so isn't there something like a tax write off or government help affording foods if you are formally dx? Doing it or not is up to you. If it would be worth it for $ reason, it may be worth it for a formal dx.

I am in England but we also get money off here, so yes that is an incentive! :)

Kirstie Apprentice

Since you are seeing good results on the diet and the chance of a false negative on testing is pretty high personally I would just keep doing what you are doing.

How likely is getting a negative test result? Do you know why this happens?

Thanks :)

MitziG Enthusiast

Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.

dani nero Community Regular

It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.


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Kirstie Apprentice

Well, you may be non-celiac gluten intolerant. It is much more commmon than celiacs, and the reaction can be just as severe. Such is the case with most people on this board. Gluten intolerance does not show up on a test, and unfortunately, is disregarded by most doctors.

Celiac testing has a false negative rrate of about 30%- so your chaces are sketchy of getting a positive, even if you survived the lengthy "gluten challenge" which seems unlikely, given the severity of your reaction.

I wonder if there is a possibility of doin an in-office gluten challenge? If you react quickly and negatively (passing out) perhaps a doctor could observe this firsthand and would be willing to dx based on your severe reaction.

Thanks for that info! I wasn't aware that just intolerance doesn't show up on a test, but that makes sense.

I think I'll try gluten for a the month, keep a food diary and compare my symptoms on gluten to the diary I kept when I was gluten-free!

The in-office test is also a great idea, thank you very much! :)

saintmaybe Collaborator

After being gluten free for a month and seeing a fantastic difference to my health (almost all symptoms gone!!) A second doctor has recommended I go back on gluten for 4-6 weeks in order to be formally diagnosed.

I've suffered my entire life, but symptoms have been much worse the past 3 years, and not one doctor has supported me or made me feel listened to! :(

After discovering I may be coeliac and going gluten-free for a month and achieving great results, I've gone to two doctors with my findings, only to be told it's most likely IBS and that I should go back to gluten and get tested.

Has anyone else had similar experiences? How did you cope? Is there anyway to be tested?

I accidentally ate gluten last week and passed out for 2 hours, it took me two days to recover :( I really don't want to suffer like that for 6 weeks!

Thanks

K x

I went through pretty much the exact same thing, except I was four or five months gluten free. I decided I HAD to know if it was celiac disease, and did do a gluten challenge. In the end, my celiac diagnosis was negative, but I have an enlightened gastroenterologist, and was diagnosed with gluten sensitivity.

In the U.S., this is still not a formally recognized diagnosis, although it's gaining a lot of traction in the established medical community. My primary care doctor is aware of it, and many of her patients are gluten free.

I've since found out that I have gluten sensitivity on both sides of the family, including tendencies towards alcoholism, depression, and Alzheimer's.

Probably the most direct evidence of gluten sensitivity is my brother, who tested positive for Ankylosing Spondylitis, and is now eating primal to get the inflammation down. I'm convinced I have it too, and have triggered a flare by going back on gluten for testing. Both my shoulders, my lower back, and my hip are stiff and sore to the point of not getting restful sleep at night. I'm going to see a rheumatologist next week to confirm the diagnosis, which is actually more of a diagnosis of elimination.

I'm glad I got my diagnosis though, because I feel I can help contribute to the research surrounding gluten sensitivity. Understanding this disorder, or disease process, is still in it's infancy. I'd say getting tested depends on your need to know, as well as the potential value you see a diagnosis adding to your life.

love2travel Mentor

Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger. :D

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.

srall Contributor

I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!

Kirstie Apprentice

Both ways have merits. I had to have the scope done because I simply did not believe I could have celiac. Can you say denial? At that time, I did not have obvious symptoms or feel at all eating gluten. I found out through genetic testing. My doctor told me my bloodwork was positive but at that time I did not really get it and thought that was not enough. Anyway, my doctor also wanted me to have a colonoscopy to see if anything else was happening. Thankfully there was not but the villi blunting was very obvious according to my gastroscopy and that is when I took it extremely seriously and have been strictly gluten free for about 15 months. I have no idea whether I have been glutened or not. But my regular bloodwork shows that my ttg is now negative, whereas before my numbers were off the charts positive. Retrospectively I see things I can now associate with celiac (i.e. miscarriages, weak tooth enamel, brittle fingernails...). Now my enamel and nails are far stronger. :D

Tough decision but personally if I did not get it done I would most likely not be avoiding gluten. The official diagnosis was necessary for me. It was also good to be informed of the extent of damage done.

But I can certainly understand why so many of those who have been off gluten for some time and feeling so much better refuse to go further. If gluten = pain + discomfort it would be so difficult to re-introduce something offensive to your body. Deliberately.

Wow what a strange way to be diagnosed! Glad to hear you've been successfully diagnosed and now know what's best for your health :)

I tried last evening to re-introduce gluten and woke up vomiting for an hour, ate cereal this morning nevertheless and although I don't feel nauseas from cereal, suffering cramps, fatigue and aches :( Can't believe there isn't another way!

Kirstie Apprentice

I was in your shoes but I chose NOT to go back on gluten to test. A minor mishap with a creamy clam chowder put me in bed for three weeks, so eating a lot of gluten for several weeks wasn't going to happen. I had a family to take care of. Plus a diagnosis wasn't going to change my behavior. But some can survive the gluten challenge to get the diagnosis. It sounds like you're going for it so good luck!

I understand how you feel, after suffering painful vomiting last night and now fatigue, cramps and aches after eating just two gluten containing meals, I am re-considering ever listening/visiting a doctor with this again!! :(

Kirstie Apprentice

It all depends on how much you need to be formally diagnosed VS. how much you don't want to experience your symptoms again.

If you can't live without the money off or having proof on paper of your condition, and you don't mind going through your symptoms again (which might be hitting back a little harder depending on how long you've been gluten-free) then go for the challenge.

There are perks to each side, it's up to you to decide which perks are more valuable to you.

Very true, I was just hoping there was some other way to be diagnosed that doesn't include poisoning myself for 6 weeks and dealing with sceptical doctors that treat me like a silly little girl! :angry:

srall Contributor

Kirstie, my mom had the same experience as you. She was gluten free for 2 years (sans diagnosis) and was still anemic. Her doctor convinced her to do the gluten challenge so they could do a scope. She was vomiting and (TMI alert) couldn't even get out of bed to go to the bathroom after the first gluten meal. She called the doctor and talked to the nurse, who was insistent that she needed to continue so they could get a diagnosis. Finally the doctor heard about the conversation, called my mom back and told her "For God's sake, stop! No more gluten." Hopefully your doctor gets it.

Sorry you got sick. I'm not one bit surprised though. Hope you're feeling better today.

Monklady123 Collaborator

For me personally I would never do it. And I haven't. B) I know that when I eat gluten I feel awful. If I don't eat it I'm fine. My doctor agrees, and based on "somewhat conclusive" blood work (weird, I know) she says "most likely celiac". I don't care if it is, or if it isn't. If it isn't then it's definitely gluten intolerance. Which amounts to the same thing in my book: giving up gluten entirely.

And if your doctor says to have the test because he's still convinced it's "only" IBS... well, why does it matter? I mean, if going gluten free has cured your "IBS" symptoms, or if it has cured your "celiac/gluten intolerant" symptoms, it seems to me that the main point is that your symptoms are cured! That should be the bottom line, in my non-medical opinion. :lol:

So like I said, I couldn't do it. I don't have time to be sick for that long, and I don't care if I don't have the biopsy. I feel great and that's all that counts!

love2travel Mentor

Wow what a strange way to be diagnosed! Glad to hear you've been successfully diagnosed and now know what's best for your health :)

I tried last evening to re-introduce gluten and woke up vomiting for an hour, ate cereal this morning nevertheless and although I don't feel nauseas from cereal, suffering cramps, fatigue and aches :( Can't believe there isn't another way!

Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life! :D

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. :( Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have. :)

Skittles Enthusiast

I was in the same situation. I went off it for about a month and I was starting to feel better, but my doctor wanted me to go back on gluten for a month to get the test. I decided to get the test done and I am happy that I did. It was kind of a relief when I found out that I was celiac because I finally had an answer to why i had all of these problems! And like someone else said, I get a tax break (I am in Canada) so I thought that was beneficial since gluten free foods and much more expensive.

GFweightlifter Newbie

I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!

Charli61 Apprentice

Good luck, yes the challenge stinks, but I do think it's the only way.

Kirstie Apprentice

I am a self- diagnosed gluten intolerant/ celiac. I tested negative for celiac disease on the blood test recently and the doctors would not do an endoscopy despite all my symptoms pointed to celiac disease (gas, bloat, chronic diarrhea, bruising, fatigue,lactose and other carbohydrate intolerances, just to name a few). I have not had a good experience with doctors concerning this. I've seen 4 different doctors and they all made me feel like I'm making it up. Just told me to take fiber and probiotics...oh and lots of prilosec. They all also seem to be more than willing to do colonoscopies, but seem uninterested in checking out my small intestines. Anyway....

So I decided 6 weeks ago to go gluten free and I feel great. A lot of my symptoms are gone or at least have lessened in severity and I'm starting to feel like a person again, rather than a zombie lol.

I won't try to get an "official" diagnosis. In the past 6 weeks I've been doing a lot of research and found that there is a high false negative rate for the blood test and I guess a lot of doctors are not doing endos correctly so that leads to a relatively high false negative rate for that too. With that in mind it's not worth it to me to intentionally "poison" and harm my body with gluten for an extended length of time just to get an official diagnosis. I really really hope that there will be a better way to test for this in the near future so we don't have to go through this mess!

I'm sorry to hear that you've struggled with doctors too! I completely agree with your decision, at the end of the day its your body and you know better than anyone what hurts it!

I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!

Thanks for taking the time to share everyone! I'm so lucky to have found this board full of wise and helpful people! I too hope that one day a better way of testing will be available, until then I will eat what makes me feel good, and be weary before ever asking a doctor again! (sad but true.)

Kirstie Apprentice

Believe me - I was so shocked when my doctor told me I had celiac that I asked him to make sure the results had my name on the top. Even then I did not believe it. I love food too much to have celiac! And I teach cooking classes! Man, I was NOT impressed. However, that was 15 months ago and about 4 or 5 months into it I realized that it was not as bad as I first thought. It soon became part of my regular daily life. Chances are this diagnosis SAVED my life! :D

So sorry that you are so ill. I can relate in a way - I have chronic relentless pain, each and every day. Always. Especially bad at night. Though our pain is different I can sort of understand how icky and distraught you must feel. :( Whatever you decide, commit to your decision and feel confident about it. It does not matter what others say or think - it is ultimately up to you. It is YOUR body. You only have one. So, you have to do what is right for the body you do have. :)

I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x

love2travel Mentor

I'm glad you are now living a healthier life and hopefully feeling much better for it!! After eating gluten Wednesday I spent the night vomiting, shaking and fatigued. I slept all of Thursday and came out in a rash on Saturday. There is no way I putting myself through that for 6 weeks in order to have a doctor tell me what I already know, gluten makes me sick!

Thanks for the support, and helping me realise that it is my body and my decision.

K x

Thanks for your kind post! I cannot really say I feel much better physically (a little bit less muscle pain that I have been told is fibromyalgia) but the biggest thing is that I feel better mentally, knowing I am taking care of myself better. You know what? A diagnosis like this also forces you to take inventory of all aspects of your life (at least it did me) and I knew it was time to stop making poor, non-nutritious health choices.

Your symptoms are so horrid and sad. I really feel for you. Good for you for making the right choice for you! :) Remember that your body is very precious.

anabananakins Explorer

I've decided to stay off gluten, just so a doctor can say "yes you are celiac" doesn't seem worth it, and there is obviously no guarantee they will do the test correctly! So what's the point in poisoning myself for 6 weeks, then recovering again for 4 weeks, 10 weeks of hell and tears is not worth it!

6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon :)

love2travel Mentor

6 weeks is likely not long enough to poison yourself anyway, I read everything I could to find a guaranteed time for the gluten challenge and all I found out is that everyone suggests something different. Well to be on the safe side, I did a 3 month challenge and still tested negative. Twice. Meh, went gluten free again (I'd been gluten free for a month on the paleo diet which is how I realised I had a problem with gluten) and felt amazing in 3 days. Never looked back. Glad you're getting there and I hope you feel completely well soon :)

That is true. My doctor told me I must eat gluten for at least 3 months and eat the equivalent of 3 pieces of bread per day. It was easy for me but not for many of you. :(

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    • 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.
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