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Self Elimination Diet - Risky?


Bobbie Jo

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Bobbie Jo Rookie

Hey Veteran Posters - This newbie has a question that I am being asked and I don't know how to answer.

If I am gluten sensitive, how come I did not get sick all of the time eating gluten. But when I went off gluten, then reintroduced it, I got sick - even if eating a crumb of it?

I had stopped eating gluten to try and fix asthma-type/VCD problems. I've been off gluten about 6 months. When I eat just a little accidentally, I get the bloating, gas, etc. This did not happen before when I would eat gluten. Am I making sense?

Some well meaning people seem to think it's dangerous playing with going gluten free if you do not know for sure, and that if you take it out of your diet then reintroduce it, it causes the most havoc.


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shopgirl Contributor

Yes, it absolutely makes sense that your more sensitive to it now. If you had no problems with gluten, you would have no problem eating it again. My mom went gluten-free the first month with me and was perfectly fine when she ate a slice of gluten bread the other day. She's not Celiac or gluten-sensitive so it doesn't have any affect on her.

I've never seen anyone suggest that everyone who stops eating gluten will become intolerant of it.

mushroom Proficient

When our body is constantly exposed to something that disagrees with it, even though it produces antibodies toward it, it tries to maintain a state of what I would call homeostasis, whereby it can continue to function as well as possible. It doesn't like the gluten, but with a constant stream of it it has to handle it the best it can. Once the gluten is withdrawn, the body draws a deep breath, Aaahhh!! and says, now I can recover. So it stops making the antibodies and sets about the healing process. But if suddenly confronted with gluten again, all the antibody soldiers, who have been waiting in the wings all this time, come charging forth with bayonets drawn and attack those little gluten monsters before they can re-establish :lol:

So the danger lies not in the withdrawal of something that does not agree with you, but in trying to reintroduce it. If it does not disagree with you, you can start and stop it with impunity.

FooGirlsMom Rookie

Mushroom, you are too funny! That was a very easy-to-understand and mentally VISUAL explanation! ;) I enjoyed that and learned something too.

Thanks!

FooGirlsMom

Skylark Collaborator

Well stated, shroomie! It only causes such havoc trying to reintroduce gluten if you are gluten-sensitive to begin with. And lots of us get more sensitive once we're on the diet.

sandsurfgirl Collaborator

My opinion is you have celiac disease. Somebody who does not have celiac disease wouldn't get sick if they ate gluten again.

Your well meaning friends are making me laugh. Why would it be risky to go gluten free? Like there is some inherent goodness about eating gluten? I'm sorry I find that funny, and well... sort of dumb. LOL

You get more sensitive because you body has healed much of the damage to your intestines and now you don't have a tolerance for it. Likely you also felt sort of "sick" all the time on gluten and now that you feel better you are going to notice symptoms as well. Everyone becomes way more sensitive after they go gluten free.

If I were you I would just tell people I have celiac disease. If they ask how you got diagnosed just lie and say blood tests. It will make your life a whole lot easier and it's really none of their business what you eat or how you got diagnosed. Dietary response IS a valid diagnostic tool. You don't need a doctor or a test to tell you gluten hurts you. Your body is telling you that.

Bobbie Jo Rookie

Ah... the wisdom of the posters has brought peace to my life today. Thank you so much. Now, as I confront these well meaning relatives I can handle it a bit better. Actually, I think they all have the same problem but are in denial and trying to take me with them :) Not going there!!!!

You all are awesome.

Best,

Bobbie J.


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plumbago Experienced

Hi Bobbie J (is it Jo??),

Why not just get the antibody tests done? Then if those are elevated, get the endoscopy? If it's a matter of insurance/cost, I understand. Personally, I felt much better knowing I had it without a doubt after my endoscopy.

Plumbago

Loey Rising Star

When our body is constantly exposed to something that disagrees with it, even though it produces antibodies toward it, it tries to maintain a state of what I would call homeostasis, whereby it can continue to function as well as possible. It doesn't like the gluten, but with a constant stream of it it has to handle it the best it can. Once the gluten is withdrawn, the body draws a deep breath, Aaahhh!! and says, now I can recover. So it stops making the antibodies and sets about the healing process. But if suddenly confronted with gluten again, all the antibody soldiers, who have been waiting in the wings all this time, come charging forth with bayonets drawn and attack those little gluten monsters before they can re-establish :lol:

So the danger lies not in the withdrawal of something that does not agree with you, but in trying to reintroduce it. If it does not disagree with you, you can start and stop it with impunity.

Shroomie- you rock!!!!

Loey

cahill Collaborator

When our body is constantly exposed to something that disagrees with it, even though it produces antibodies toward it, it tries to maintain a state of what I would call homeostasis, whereby it can continue to function as well as possible. It doesn't like the gluten, but with a constant stream of it it has to handle it the best it can. Once the gluten is withdrawn, the body draws a deep breath, Aaahhh!! and says, now I can recover. So it stops making the antibodies and sets about the healing process. But if suddenly confronted with gluten again, all the antibody soldiers, who have been waiting in the wings all this time, come charging forth with bayonets drawn and attack those little gluten monsters before they can re-establish :lol:

So the danger lies not in the withdrawal of something that does not agree with you, but in trying to reintroduce it. If it does not disagree with you, you can start and stop it with impunity.

very well said :D

Bobbie Jo Rookie

Hi Bobbie J (is it Jo??),

Why not just get the antibody tests done? Then if those are elevated, get the endoscopy? If it's a matter of insurance/cost, I understand. Personally, I felt much better knowing I had it without a doubt after my endoscopy.

Plumbago

Well Plumbago, I'm so glad you asked, because you may have some advice for me. I do have a high deductible (5K), so your first suspicion is correct. But I am wondering if an official diagnosis would create problems down the road if I need to get new insurance, which is possible. Of course - I know much will change in the insurance world, but basically, it seems like would be smoother sailling if I didn't get this offical label on my records.

Also, since I have been off gluten for 6 months, I was thinking that the antibody test and endoscopy would be a waste of time because there is likely a lot of healing.

I wonder if you just eat gluten one time the day before a test or endoscopy that results would show.

One good reason for getting offcially diagnosed is being the first in the family to label this disease so future generations can know we've got it. That would be worth it to me. But again, just wondering if it's too late for the tests.

And, it is Bobbie Jo! But isn't Bobbie J so much cooler? I mean, I need all the cool help I can get. So maybe I will change that log in name.

Thanks Plumbago for caring!

mushroom Proficient

There has been lots of discussion here, Bobby Jo, about the merits or demerits of a celiac diagnosis. On the one hand, those with disbelieving family members find it helpful to point out to them, see, I have this official diagnosis that proves that gluten harms me. On the other, insurance companies think you are going to keel over overnight because gluten is a problem to you, and how can you prove to them that you are not stupid enough to eat gluten any more. Proving a negative is a lot harder then a positive.

You are correct in your assumption that positive testing would require you to resume eating gluten for 2-3 months, and this would probably be an extremely painful experience for you if you are gluten intolerant. No, you can't just eat gluten the day before the test and get an accurate result. Your body has done a lot of healing, and those antibody soldiers have been put on leave :lol: and it would take a while to recall them and get them on active duty again. So unless you want to spend money and suffer, it looks like you are stuck with the self-diagnosis like me. But, as noted above, it does have a positive side. I just hope that you have a family who understand that this is a serious disease and that they may well have it too :(

Monklady123 Collaborator

Hi Bobbie J (is it Jo??),

Why not just get the antibody tests done? Then if those are elevated, get the endoscopy? If it's a matter of insurance/cost, I understand. Personally, I felt much better knowing I had it without a doubt after my endoscopy.

Plumbago

As someone else said, there are good reasons not to do the endoscopy. For me it's the misery I'd have to go through while eating gluten for several MONTHS before the test. And I don't need the endoscopy to tell me "without a doubt" that I have it, I already know without a doubt that I do. For me it's pretty simple: eat gluten = feel miserable; don't eat gluten = have my life back. B)

Bobbie Jo Rookie

Dear Mushroom and Monklady123 -

Your sage advice means so much. Thank you. I will definitely not forego months of subjecting myself to poison to get diagnosed.

I humbly ask for a bit more of your precious time and valuable wisdom as I further this conversation. But I wonder if it was a mistake to not take my kids through all of the testing so they would know for sure if they have the disease. A question is coming... but first, very brief history:

A blood test for my 10 yr old son was negative and the stool test with Enterolab resulted in low antibody count - not enough to say for sure if he had the problem. However, I had been eliminating gluten from his diet in the weeks prior to the Enterolab test. He's such a foggy headed guy, also poor enamel on teeth, asthma, short stature and infrequent stomach problems, so I suspected gluten sensitivity.

My 8 yr old daughter, I thought, did not have a problem, but I got her tested anyway with the stool test and I was surprised that she did come back positive for gluten sensitivity. I decided to try the elimination diet for both kids. We started about 2 months ago and have yet to reintroduce gluten. I was going to wait another month.

Without gluten, the changes in the kids' lives are astounding. They are growing more rapidly (an inch each in 20 days) and their attentiveness in school has earned unsolicited remarks from teachers. We are also seeing much better weekly grades on memory tests such as spelling tests. Even more exciting for me is that they remember what I tell them, and they have follow through with tasks. That is HUGE.

The question is coming..

My sister, nephews and nieces are just now getting into diet elimination after seeing our results. If we take the insurance issue out of the picture, I wonder if I should strongly suggest they get the endoscopy. They did get blood tests and some came back positive, some not.

If you two had to do it again, would you get the endoscopy earlier in the process?

Also, this may be a sticky political question, but does anyone put any merit into genetic testing via stool samples for the disease? If I get no replies on that, I will know my answer!

Happy gluten-free Turkey Week!

Bobbie Jo (I'm sticking with the Jo. Can't figure out how to change it on my sign in anyway)

mushroom Proficient

I am so glad for you, Bobby Jo, that you are noticing such an improvement in your kiddos - it is a verification that gluten free is right for them irrespective of any blood tests, stool tests, endoscopy, whatever. I am constantly amazed at the number of posters who notice this result and constantly amazed at the number of medical professionals who continue to pooh-pooh the link between diet and behavior.

I am probably the wrong person to ask about endoscopy - heck, I never even had a blood test :o A few months later I did do a stool test (not Enterlab, with Diagnos-Techs) to rule out other problems like candida, etc. But I doubt that I would have had the endoscopy even if I had had the positive blood test (well, knowing what I know now, that is; someone might have talked me into it previously). The testing is just not that accurate unfortunately, at least a 20% error rate with blood and endo). So many people have relied on these negative results to their detriment. Because the tests pick up only celiac disease, not plain old everyday gluten intolerance. Also the endo depends on the skill of the doctor, the number of samples he takes, and whether he takes them from the right places, in other words in less than overwhelmingly positive cases there is a lot of luck involved.

Now you will get the exact opposite viewpoint from a lot of posters who swear that you have to have the endo to be "officially" diagnosed and without it, well, how can you ever really 'know'?? Well, I have no problem living in this gray area; others do. It is really an individual thing. My personal feeling is that if gluten bothers you, don't eat it, end of story. I have never heard of anyone suffering ill effects from a lack of gluten. So your sister and her family will have to make up their own minds about this issue.

As far as the genetic testing is concerned, it is interesting to know, and since this is a hereditary condition there will be several close relatives according to the statistics who will carry a gene predisposing them toward gluten intolerance/celiac. Does not mean that they will ever actually develop it, just that if the circumstances are right and a triggering event occurs, they well may. So it is not diagnostic; only of interest. And there are a lot of questions about which genes are related to celiac/gluten sensitivity; they keep finding new genes all the time, so not having DQ2 or DQ8 is not really as significant as they used to think.

Do you feel like I just threw a cup of cold water on your head?? :lol: See, I told you I was the wrong person to ask!! :D

As far as your kiddos are concerned, if they ever in the future doubt that they are gluten intolerant they can always make up their own minds to start eating it again. But if they really are intolerant of it, it will probably be such a painful experience that they will stop again. But if not, you have done your best for them to grow up strong and healthy and then it is up to them to live their own lives.

Hope you have a fabulous gluten free Thanksgiving.

Loey Rising Star

Dear Mushroom and Monklady123 -

Your sage advice means so much. Thank you. I will definitely not forego months of subjecting myself to poison to get diagnosed.

I humbly ask for a bit more of your precious time and valuable wisdom as I further this conversation. But I wonder if it was a mistake to not take my kids through all of the testing so they would know for sure if they have the disease. A question is coming... but first, very brief history:

A blood test for my 10 yr old son was negative and the stool test with Enterolab resulted in low antibody count - not enough to say for sure if he had the problem. However, I had been eliminating gluten from his diet in the weeks prior to the Enterolab test. He's such a foggy headed guy, also poor enamel on teeth, asthma, short stature and infrequent stomach problems, so I suspected gluten sensitivity.

My 8 yr old daughter, I thought, did not have a problem, but I got her tested anyway with the stool test and I was surprised that she did come back positive for gluten sensitivity. I decided to try the elimination diet for both kids. We started about 2 months ago and have yet to reintroduce gluten. I was going to wait another month.

Without gluten, the changes in the kids' lives are astounding. They are growing more rapidly (an inch each in 20 days) and their attentiveness in school has earned unsolicited remarks from teachers. We are also seeing much better weekly grades on memory tests such as spelling tests. Even more exciting for me is that they remember what I tell them, and they have follow through with tasks. That is HUGE.

The question is coming..

My sister, nephews and nieces are just now getting into diet elimination after seeing our results. If we take the insurance issue out of the picture, I wonder if I should strongly suggest they get the endoscopy. They did get blood tests and some came back positive, some not.

If you two had to do it again, would you get the endoscopy earlier in the process?

Also, this may be a sticky political question, but does anyone put any merit into genetic testing via stool samples for the disease? If I get no replies on that, I will know my answer!

Happy gluten-free Turkey Week!

Bobbie Jo (I'm sticking with the Jo. Can't figure out how to change it on my sign in anyway)

Hi Bobby Jo,

Welcome to our family. I was diagnosed last June after being bedridden for 6 weeks. After running the gamut of tests my GI gave me the test results literally the night before we moved to a new state. I had severe celiac disease and she thought it had gone undiagnosed for decades. When we got to our new state I found a GI and had my son genetically tested (phew - he was negative, one less thing to blame mom for). His was a blood test, though. I needed the most accurate form of testing for him because he was leaving for college and we needed to deal with a meal plan. He had just begun to eat gluten free at that point because I would not allow it in the house. I think even if you are eating gluten-free the blood test still shows accurately if you're positive or negative. Someone please correct me if I'm wrong.

I'm so glad to hear that your children are doing better and hope that you are as well.

Loey smile.gif

rdunbar Explorer

gluten intolerance/celiac seems to be a spectrum, like autism is; there are many different degrees of it.

many ppl report their symptoms/sensativities get worse after going truly gluten-free for a while. definately the case w/ me, too. it's important to know WHY this happens, and you've gotten a lot of good info ITT.

i think everyone is on the spectrum, even if they are on the very low end of it.

it would be interesting to do a study where you put random ppl on a gluten-free diet for X amount of time, then reintroduce it, and see what happens.

I'm geussing every single person would feel worse somehow, whether it's just a runny nose, or headaches, the kinds of things ppl just assume are 'normal'.

i would surely bet no one would feel better, although they are getting thier gluten addiction satiated again!

gluten is just nasty stuff, whether someone reacts to it or not noticably.

eliminating gluten is never dangerous, ever, to anyone. au contrare, mon frare (pardom my french)

plumbago Experienced

In response to your posting, Bobbi J, someone said there is no harm in not eating gluten. I go back and forth on this a lot. When I first gave up gluten in the first quarter of this year, I was thinking that there are surely a lot of "essential vitamins" and maybe minerals I was NOT getting by not eating bread. I haven't investigated, but I still suspect this is somewhat true. On the other hand, in regards to the insurance issue, BOOM! right back the other way I swing again! Meaning, it just seems patently wrong and unfair to label people with celiac disease as having a "pre-existing condition" and therefore more of some kind of risk (not sure what kind) because when treated, it would seem to me just instinctively that people on a gluten-free diet would be among the healthier segment of the population out there. So obviously I am a bit full of contradictions. It's hard to sort out without a science background, sometimes. But I had never ever thought about the celiac disease diagnosis as a potential barrier to low insurance premiums down the road. Oh well, too late now.

But more to your points, I was lucky in that it was - surprisingly - the medical community in the form of my super rushed, cattle calling doctor who suspected I might have celiac disease, and he just flat out told me not to stop eating gluten so that the test can have an accurate reading, etc etc...I obeyed because I was holding to the slim slim hope that I would not have to give up the pizza slices at work, the candy bowls on people's desk and so on. For me, yeah, being gluten-free is still inconvenient, though yes I feel a lot better. (More contradictions)

Others have weighed in by now with the question of introducing gluten back in to your diet.

And as far as family goes, my family more or less could not care less. I try to talk to them about it, just getting tested, and they react to me like I'm a rattlesnake. So if you can draw your family in, congratulations.

Loey Rising Star

In response to your posting, Bobbi J, someone said there is no harm in not eating gluten. I go back and forth on this a lot. When I first gave up gluten in the first quarter of this year, I was thinking that there are surely a lot of "essential vitamins" and maybe minerals I was NOT getting by not eating bread. I haven't investigated, but I still suspect this is somewhat true. On the other hand, in regards to the insurance issue, BOOM! right back the other way I swing again! Meaning, it just seems patently wrong and unfair to label people with celiac disease as having a "pre-existing condition" and therefore more of some kind of risk (not sure what kind) because when treated, it would seem to me just instinctively that people on a gluten-free diet would be among the healthier segment of the population out there. So obviously I am a bit full of contradictions. It's hard to sort out without a science background, sometimes. But I had never ever thought about the celiac disease diagnosis as a potential barrier to low insurance premiums down the road. Oh well, too late now.

But more to your points, I was lucky in that it was - surprisingly - the medical community in the form of my super rushed, cattle calling doctor who suspected I might have celiac disease, and he just flat out told me not to stop eating gluten so that the test can have an accurate reading, etc etc...I obeyed because I was holding to the slim slim hope that I would not have to give up the pizza slices at work, the candy bowls on people's desk and so on. For me, yeah, being gluten-free is still inconvenient, though yes I feel a lot better. (More contradictions)

Others have weighed in by now with the question of introducing gluten back in to your diet.

And as far as family goes, my family more or less could not care less. I try to talk to them about it, just getting tested, and they react to me like I'm a rattlesnake. So if you can draw your family in, congratulations.

Here's a link to a doctor discussing celiac that I found very interesting.

Loey

Bobbie Jo Rookie

Do you feel like I just threw a cup of cold water on your head?? :lol: See, I told you I was the wrong person to ask!! :D

No, no, no. More of a feeling like we were sitting down over a cup of tea and I'm hanging onto your every word.

I think my biggest takeaway of this post is - trust your gut. No need to get official labels. Also, you can't force other people to think or do anything, even your own kids when they are grown and gone. You have to provide the information and then hope they take it - even if the advice is coming from someone not officially diagnosed with "Celiac Disease".

Thanks again. This is all helping me build the foundation for the rest of our lives gluten free.

I didn't label this post right - it's not "Self Elimination Diet"! Although, I suppose that's what we should all be doing so we can be of service to others. :)

sandsurfgirl Collaborator

In response to your posting, Bobbi J, someone said there is no harm in not eating gluten. I go back and forth on this a lot. When I first gave up gluten in the first quarter of this year, I was thinking that there are surely a lot of "essential vitamins" and maybe minerals I was NOT getting by not eating bread. I haven't investigated, but I still suspect this is somewhat true. On the other hand, in regards to the insurance issue, BOOM! right back the other way I swing again! Meaning, it just seems patently wrong and unfair to label people with celiac disease as having a "pre-existing condition" and therefore more of some kind of risk (not sure what kind) because when treated, it would seem to me just instinctively that people on a gluten-free diet would be among the healthier segment of the population out there. So obviously I am a bit full of contradictions. It's hard to sort out without a science background, sometimes. But I had never ever thought about the celiac disease diagnosis as a potential barrier to low insurance premiums down the road. Oh well, too late now.

But more to your points, I was lucky in that it was - surprisingly - the medical community in the form of my super rushed, cattle calling doctor who suspected I might have celiac disease, and he just flat out told me not to stop eating gluten so that the test can have an accurate reading, etc etc...I obeyed because I was holding to the slim slim hope that I would not have to give up the pizza slices at work, the candy bowls on people's desk and so on. For me, yeah, being gluten-free is still inconvenient, though yes I feel a lot better. (More contradictions)

Others have weighed in by now with the question of introducing gluten back in to your diet.

And as far as family goes, my family more or less could not care less. I try to talk to them about it, just getting tested, and they react to me like I'm a rattlesnake. So if you can draw your family in, congratulations.

People eating white bread and the brown colored white bread they try to pass off as whole wheat aren't getting tons of nutrition from that even though they are fortified. I don't see how cutting gluten could make you miss out on vitamins and minerals. There are volumes of research to prove that the SAD (Standard American Diet) is well... sad. And bad for you. When people find out they have celiac they generally clean up their diet and eat healthier.

Loey Rising Star

People eating white bread and the brown colored white bread they try to pass off as whole wheat aren't getting tons of nutrition from that even though they are fortified. I don't see how cutting gluten could make you miss out on vitamins and minerals. There are volumes of research to prove that the SAD (Standard American Diet) is well... sad. And bad for you. When people find out they have celiac they generally clean up their diet and eat healthier.

Amen to that!!! I think that anything that we re missing in our diet can be replaced with vitamins. Eating gluten certainly does us extreme harm!!!

Happy gluten-free Thanksgiving to all,

Loey

Bobbie Jo Rookie

Great stuff everybody. Thank you so much. It's crazy how much better you can handle this lifestyle with support like this.

plumbago Experienced

Amen to that!!! I think that anything that we re missing in our diet can be replaced with vitamins. Eating gluten certainly does us extreme harm!!!

Happy gluten-free Thanksgiving to all,

Loey

Yes, that's true, but before going gluten-free and despite my pizza slice comment I was eating pretty darn healthy anyway. But I missed the point that even if I am missing out on vitamins and minerals from the bread, when I was eating it, they were probably getting cancelled out by the gluten!!

Korwyn Explorer

Love your imagery shroom! And in response to the title, YES! there is a risk in a diet which eliminates self! :D

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      My chest pain has been caused by costochondritis, as well as times when iron supplements has given me such bad bloating it has put pressure on my back and chest, and reflux can do the same. Also, along the lines of Wheatwacked's suggestion above, is it possible you had an injury to your chest/ribs way back that is being set off by either some sort of gastrointestinal bloating/discomfort? I distinctly remember really hurting a rib over forty years ago when I misjudged a wall and thought it was just behind me but in fact it wasn't.  I fell badly against the wall and I think I cracked a rib then.  For some strange reason I didn't tell anyone but I think had I gone to hospital an X-ray would have revealed a fracture. I think that rib has not been right since and I am sure that bloating makes it worse, as well as heavy lifting.
    • 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.
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