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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Family Says I'm Paranoid And Should Go Back To Eating Gluten
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51 posts in this topic

Just as background, I have not been tested for celiac disease, went on an elimination diet on my own several months ago because of various GI and neurological and autoimmune problems, and since then things have been kind of crazy. I've found several food intolerances and it seems like I'm gluten intolerant, since every time I eat gluten, I have had sharp stabbing abdominal pains, burning pain, bloating, gas, headaches, dizziness, etc etc. My digestion in general is so messed up that I still wonder whether it could be other things causing it, but as I've eliminated other problem foods it's getting harder to blame the reaction on something else. I also seem to be really sensitive to small amounts. I'm Catholic and have had to stop receiving Communion because I seem to be reacting to CC.

No one in my family understands this at all - even though my parents are actually gluten-free themselves! but they don't have all the problems I do. So some of my family members are always trying to get me to go out to eat with them and every time I go out to eat, I get sick (either from CC or other foods I can't handle), so I've refused to go out anymore, and they keep acting like it's me just being difficult or something even though I've tried to explain multiple times that it's a health issue. Then today I was talking to my mom and I was depressed because of the ways this has been affecting my life, and my mom told me that they (she and my other immediate family) think I'm being paranoid because I'm trying to avoid even small amounts of gluten and that, if I'm so sensitive to small amounts, I should go back to eating lots of gluten because then my reactions would be less (?) and because I was happier before when I was eating it. :huh: It turned into a shouting match with me telling them they didn't understand anything about gluten intolerance and then they hung up on me.

I feel completely isolated and alone with this. I don't want to scare anyone or break some forum rule but after this conversation I thought of calling a suicide hotline - and then I thought that the person on the hotline would probably say something stupid about gluten intolerance and that would push me over the edge. I am feeling less desperate now, but seriously, I don't know what to do. I want to get better, not worse. I don't want to go back to eating gluten. I have an appointment with a doctor but it's not for a month. :( In the meantime I feel like I am going insane and ruining my life and my relationships with everyone around me for something that could turn out just to be in my head after all.

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I'm sorry you're having such a rough time.

You're not breaking any forum rules talking about suicide. If you are still thinking of it, especially if you have a plan of how you may carry it out, please stop reading now, pick up the phone, and call a hotline. The people on the hotlines are trained counselors, not difficult family members, and they have saved the lives of two of my friends.

It took a long time for me to get my gluten-intolerant mother to understand that I am likely celiac (I have other autoimmunity) and I can't cheat with a little regular soy sauce. I'm very glad for her that she can tolerate a little gluten now and then, but I have had to stick to my guns about the strictness of my own diet. I've finally gotten her to understand the autoimmunity issues but it's taken seven years. :rolleyes:

If you've worked out a diet that gets rid of your symptoms, it's NOT in your head. Questioning yourself will only drive you even more crazy. It may be that you and your doctor decide the best course of action is to gluten challenge (three months is the usual time for a reliable challenge) and get celiac testing. If you have other autoimmunity the chance is higher that you're celiac and the celiac diagnosis will be something your family can't dispute. If you and your doctor decide you can't challenge at least you will be gluten-free on medical advice and can justify a stricter diet.

By the way, did you get glutened recently? Gluten causes depression and anxiety in a lot of us and that may be why you are having such a rough time mentally.

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I will second what Skylark said. You have categorically not broken any rule. If you are having suicidal thoughts, please call a hotline. As noted, the people responding are trained. They will not doubt or make fun of you. Call them. Please.

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I'm sorry you're having such a rough time.

You're not breaking any forum rules talking about suicide. If you are still thinking of it, especially if you have a plan of how you may carry it out, please stop reading now, pick up the phone, and call a hotline. The people on the hotlines are trained counselors, not difficult family members, and they have saved the lives of two of my friends.

It took a long time for me to get my gluten-intolerant mother to understand that I am likely celiac (I have other autoimmunity) and I can't cheat with a little regular soy sauce. I'm very glad for her that she can tolerate a little gluten now and then, but I have had to stick to my guns about the strictness of my own diet. I've finally gotten her to understand the autoimmunity issues but it's taken seven years. :rolleyes:

If you've worked out a diet that gets rid of your symptoms, it's NOT in your head. Questioning yourself will only drive you even more crazy. It may be that you and your doctor decide the best course of action is to gluten challenge (three months is the usual time for a reliable challenge) and get celiac testing. If you have other autoimmunity the chance is higher that you're celiac and the celiac diagnosis will be something your family can't dispute. If you and your doctor decide you can't challenge at least you will be gluten-free on medical advice and can justify a stricter diet.

By the way, did you get glutened recently? Gluten causes depression and anxiety in a lot of us and that may be why you are having such a rough time mentally.

Thank you. I'm not feeling suicidal anymore and I don't have any plans. I haven't even been depressed lately. I did get glutened this morning and have been feeling rotten all day.

I am definitely looking forward to seeing a doctor who hopefully will be able to help me. I just wish he had been able to see me sooner.

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I'm very glad to hear you are feeling a little better. Don't ever hesitate to call those hotlines if you need them. They will take you seriously.

Gluten messes with my mind horribly. Sounds like it gets you too! I was diagnosed bipolar before I went gluten-free. Turns out it was my mind reacting to gluten and some vitamin deficiencies. If I'm in a bad place from gluten I have to remind myself that the gluten caused it, and that it will pass. I take Pepto-bismol for the stomach trouble. Sometimes a little vitamin B12 helps my mind settle down; I seem to burn through it oddly fast after I've been glutened. If I'm having trouble sleeping from gluten-caused anxiety I take a little valerian or passion flower herb.

It's frustrating when you have a long wait for a doctor. Seems like it took me forever to get my endocrinologist appointment. They lost my paperwork twice! :rolleyes:

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Thank you. I'm not feeling suicidal anymore and I don't have any plans. I haven't even been depressed lately. I did get glutened this morning and have been feeling rotten all day.

I am definitely looking forward to seeing a doctor who hopefully will be able to help me. I just wish he had been able to see me sooner.

{{{{HUGS}}}}

Come and vent here any time. You'll get mostly support, with a few snippy comments thrown in here and there, just to remind you that everyone here has bad days too. :P

Your health is more important than their opinion. If you are finding things that work for you, then stick with them.

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Sorry folks are giving you a hard time. It isn't unusual to have an overwhelming depression hit when glutened. I get suicidal when I get glutened also. It helps me to realize it will lift and that it is the gluten that is making me feel that way. Don't be afraid of calling a hot line they can be very helpful and are not judgemental. A good counselor may be able to help you learn to deal with family members so you may want to see if you can find one to talk to a few times.

It is good that you have an appointment coming with your doctor as having problems with gluten doesn't mean you may not also have something else going on. Your being gluten free isn't going to effect any testing other than for celiac so do be sure to tell the doctor any and all symptoms you are having and the timing of the symptoms. For example being woken up by D is not an IBS symptom so if that is happening to you be sure to mention it and don't just say you are having cramps and D.

I hope things get better for you soon.

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Thanks you guys, I don't know what I would do without this forum. And don't worry, I will definitely call a hotline if I ever need to. It's good to hear that they are helpful.

Sorry folks are giving you a hard time. It isn't unusual to have an overwhelming depression hit when glutened. I get suicidal when I get glutened also.

Wow. I didn't know that, but that does help explain why I went from being fine to debilitating depression yesterday. And the last time, before this, that I got glutened, I got really really anxious and paranoid. It's so weird that gluten would do that.

Also I am a lot less doubtful about being gluten intolerant since I was up with D all night. It was the most "classic" reaction I've had, maybe because I've been so much more careful about CC the past few weeks (and I had been actually starting to feel better).

Before I stopped eating gluten I may have been less stressed out about food and family members, but I had indigestion all the time, I had just mostly learned to ignore it unless it was really bad. Then I started vomiting in the middle for the night for no apparent reason. That's all gone away, but what has been so confusing is that I've had other problems cropping up since I went gluten-free, like sudden weight-loss, but I'm guessing that I probably have some vitamin deficiencies or something and I should probably get my thyroid checked. Also I've started taking probiotics and that seems to be helping. Eventually, hopefully, all of this will settle down into something that makes sense ... and it will be easier to deal with other people's lack of comprehension if I at least know what's going on.

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First ((HUGS))

It is not uncommon to have other food intolerances. Unfortunately allergy testing can't always show that food intolerances are tripping the switch for your immune system to go haywire. You might have to figure some of these things out for yourself. The best tool for this is an elimination diet (of the top 8, peas, andany of your suspected allergens). Please keep in mind some of these type of reactions can last 12 days after the "trigger" has been injested. You will need to keep a very detailed food journal.

I am a mother. If there is any food that makes my daughter sick, she is not eating it I have any control over the situation. I also support her by not eating anything she can't have in front of her. (I think that is just cruel top eat something in front of someone when you know they can't have it.)

Sometimes the hardest thing about a gluten free diet (or having to eliminate any allergen) is finding out who your true friends are. Someone who truely cares about you will never ask you to do something that is harmful to you. It's even sadder when you find out family is not your friend.

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I'm sorry your family is being so awful.

I also get suicidally depressed when I get glutened (and anxiety sometimes). It helps me when I realize it is the depression and not my clinical depression returning with a vengeance. Then I know it is going to stop. I didn't know other people experienced the same thing. Have you tried providing your parents with written documents talking about the sensitivity of people with celiac disease? Sometimes it helps for families to see information from other sources than their family member with celiac (yes it sucks that they wont listen to us). Then it isn't just us telling them how sensitive we are, it gives proof. Another thing I do is I will still go out with friends/family but I will eat beforehand or take food with me. If I don't take food then I will just order pop when people order their food. That way I'm still being social but not risking glutening. Stand strong with them. If you give in, they will expect you to keep giving in. Hopefully as they see you getting better they will realize that you need to be this careful.

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Have you tried providing your parents with written documents talking about the sensitivity of people with celiac disease? Sometimes it helps for families to see information from other sources than their family member with celiac (yes it sucks that they wont listen to us).

I think I should do that. If anyone has any links to documents that might be good for educating family members, I would love to see them!

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I think I should do that. If anyone has any links to documents that might be good for educating family members, I would love to see them!

Google "Celiac center" and they all have info you can print and bombard your family with.

http://www.cureceliacdisease.org/living-with-celiac/guide/treatment

"The gluten-free diet is a lifetime requirement. Eating any gluten, no matter how small an amount, can damage your intestine. This is true for anyone with the disease, including people who do not have noticeable symptoms. It can take weeks for antibody levels (indicating intestinal damage) to normalize after a person with celiac disease has consumed gluten. Depending on a person

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You might also want to call the doctor's office and get on their cancelation list. If you've got the flexibility to get in there on short notice after someone calls and cancels, they might be able to see you much sooner. Waiting can be so stressful.

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(hugs) Hon, I feel your frustration--- and dealing with family members can be difficult when they do not really understand how the autoimmunity factor works.

You are not alone. Gluten wreaks havoc in my brain. I call it Gluten Head Hell and I lived in it for 4 years. :blink: If I am accidentally CCed, it comes roaring back. Depression, anxiety, foggy thinking--all of it. I felt so depressed (something totally out of character for me :blink: ) that I uttered the words "I'd rather be dead than live like this!" more than once--even though I did not really mean it at all --because I kept fighting for answers as to why my health took such a bizarre turn. How I managed to keep my sense of humor is a mystery. I just KNEW it had to be something causing it all.

I told any health care person who would listen---this is not me!!--something is making me feel this way! It was the GLUTEN and Celiac.

It is NOT something you are making up-- nor are you paranoid. You are being cautious--and with good reason.

No matter what others say or think---your health comes FIRST.

My Mom (a NCGI) can take communion or pick turkey off a wheat bread sandwich and eat just the meat and not suffer what I do. Trace gluten hits me hard--as it does you, apparently.

Everyone is different and your reaction is YOUR reaction. We GET it!

There are many articles that explain gluten and depression and how it works on the brain as well as WHY celiacs should not ingest ANY amount.

Karen has provided you with a great resource. If you need more, google: The Gluten File.

Best wishes,

IH

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(hugs) Hon, I feel your frustration--- and dealing with family members can be difficult when they do not really understand how the autoimmunity factor works.

You are not alone. Gluten wreaks havoc in my brain. I call it Gluten Head Hell and I lived in it for 4 years. :blink: If I am accidentally CCed, it comes roaring back. Depression, anxiety, foggy thinking--all of it. I felt so depressed (something totally out of character for me :blink: ) that I uttered the words "I'd rather be dead than live like this!" more than once--even though I did not really mean it at all --because I kept fighting for answers as to why my health took such a bizarre turn. How I managed to keep my sense of humor is a mystery. I just KNEW it had to be something causing it all.

I told any health care person who would listen---this is not me!!--something is making me feel this way! It was the GLUTEN and Celiac.

It is NOT something you are making up-- nor are you paranoid. You are being cautious--and with good reason.

No matter what others say or think---your health comes FIRST.

My Mom (a NCGI) can take communion or pick turkey off a wheat bread sandwich and eat just the meat and not suffer what I do. Trace gluten hits me hard--as it does you, apparently.

Everyone is different and your reaction is YOUR reaction. We GET it!

Thank you. I'm sorry you've gone through so much! but it really helps to be told that I'm not alone and not crazy.

Karen has provided you with a great resource. If you need more, google: The Gluten File.

Wow, that site has a lot of information! Thank you!

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Thank you. I'm sorry you've gone through so much! but it really helps to be told that I'm not alone and not crazy.

Wow, that site has a lot of information! Thank you!

Tell yourself that all the time:

I am not alone and I am not crazy. ;) It works for me. :)

I have a friend who owns a gluten-free bakery/restaurant and she has shirts that say this on the back:

"Blame it on the Gluten" :)

Recently, in conversation with two close friends (who were not as supportive as I had hoped when I was very ill before DX) I realized they had no idea what gluten/celiac could do until they really read (and absorbed) everything I had sent, then SAW me as I basically returned to life this past year. They were as perplexed and distraught as my husband and I were when we did not know what was happening to me. Now, they ask me questions all the time and one of them realizes that she, too, may have a gluten problem herself.

Sometimes, it just takes time.

Time for us to heal and for others in our lives to come around and see what it is that makes us so ill. ( Truth be told, it is pretty unbelievable to me sometimes. <_< )

Best wishes to you! IH

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I feel for you, my family treats me the same way. I have not been diagnosed, but have spent the last few years with increasingly deteriorating health. I went gluten free on a trail basis last summer, and was treated terribly by my mom and sister when I visited them. They would sigh and roll their eyes at me if I looked at an ingredient label. There would be snide comments, and then they basically told me it was all in my head. Finally I believed them, and even though I don't eat much gluten, my health has continued to spiral. Well in the last few weeks I have been back in the doctors office.... we have been looking at auto immune issues.

Family can either be your biggest ally, or your worst enemy.

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Recently, in conversation with two close friends (who were not as supportive as I had hoped when I was very ill before DX) I realized they had no idea what gluten/celiac could do until they really read (and absorbed) everything I had sent, then SAW me as I basically returned to life this past year. They were as perplexed and distraught as my husband and I were when we did not know what was happening to me. Now, they ask me questions all the time and one of them realizes that she, too, may have a gluten problem herself.

It's good to know that people can come around in time. It always surprises me how insensitive people can be about other people's illnesses and disabilities. It actually seems to be the rule rather than the exception, but it still surprises me every time. Maybe one has to have suffered chronic illness oneself in order to learn that sensitivity, or maybe people who haven't been chronically ill are scared by it in others because it makes them think about things they don't want to think about. I don't know.

I feel for you, my family treats me the same way. I have not been diagnosed, but have spent the last few years with increasingly deteriorating health. I went gluten free on a trail basis last summer, and was treated terribly by my mom and sister when I visited them. They would sigh and roll their eyes at me if I looked at an ingredient label. There would be snide comments, and then they basically told me it was all in my head.

Yeah, it especially hurts because seven years ago when I first started having a bunch of health issues (mostly neurological), I had tests done which all came back normal and then my doctors and my parents all told me that it was in my head, and I believed them. My mom has since apologized for telling me that, but now she's doing it again!!

I hope you can figure out what's going on and feel better!

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Yes, it is the worst when family and friends don't understand or accept the way you are. If you know you feel badly when eating gluten, they shouldn't question it. Most importantly, don't question yourself. Yes, placebo's exist, but not, that doesn't mean what you have is 'in your head'. Especially since I'm not sure how much study there has been on long-term placebo effects.

Remember that you are the only person who really knows your body and your mind. Don't doubt it just because an outsider doubts it.

Having been depressed for most of my adult life, in varying degrees, 'it's all in your head' is a phrase I've come to hate. Sure most of my family believe me when I say I don't feel well or happy, but they always push me, and still do, to do things that I physically, mentally, and emotionally, can't handle, and then are just disappointed when I can't live up to that expectation. I hate being called lazy when I'm too unfocussed to even read a freakin' novel.

It's sad but true that I only now, since being diagnosed as a celiac, feel validated in how I feel and have felt.

It is surprising to think of gluten in your intestines as causing mental illness, however, auto-immune issues seems to be the newest/only physical reason that I've heard from the medical community that explains mental illness. Also things like leaky gut syndrome, which I some people say as being a gluten-eating celiac will eventually cause, allows all sorts of crap into your bloodstream, and from there, potentially the brain.

I have yet to get a whole lot more energy from being gluten-free, (especially since I've messed up a few times), but I'm hopeful. Heck, the very fact that I'm hopeful at all speaks volumes :-)

I have a cousin who recently has stopped gluten and dairy who has had a dirth of medical problems, mental and physical, from a young age, without being diagnosed, and from what I hear, she's feeling better. No surprise there really, since my immediate family think that's the side with the celiac genes; we're working on figuring it all out.

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It's good to know that people can come around in time. It always surprises me how insensitive people can be about other people's illnesses and disabilities. It actually seems to be the rule rather than the exception, but it still surprises me every time. Maybe one has to have suffered chronic illness oneself in order to learn that sensitivity, or maybe people who haven't been chronically ill are scared by it in others because it makes them think about things they don't want to think about. I don't know.

I think you are right on the money with these thoughts, hon! ;)

Here is what I have learned: if you haven't walked it, you just don't get it.

I think it is human nature to think "I feel so bad for her, but I am so glad that's not me." Not everyone can put themselves in another's shoes and imagine the pain and suffering someone else endures.

True empathy is a gift.

Not everyone has it.

Some of us possess it innately and

those of us who have suffered become masters of it.

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You are not alone. My daughter and I both have food intolerances. We are learning to adjust to our new ones because they do change over time. For us anyway...

My own mom has them also but refuses to believe it. She has been tested. She will eat what she is not supposed to. Get sick. Then want sympathy. I believe that my dad has them too. He is constantly sick. I believe that my brother also has them because he gets sick after he eats certain things. The weird thing is they all keep eating that which makes them sick.

People have said the following things to me: "Can't you just make an exception this one time?" This in regard to eating pizza back stage at a dance recital. Regular pizza. Not gluten-free. To which I replied, "Sure if I want her to not be in the show and stay in the bathroom instead."

"A little bit won't hurt!" Or "That's such a small amount. It can't affect you!" Stuff like that. When they tell me this, I ask them which prescription they take that is the smallest. They will then either show me the pill or describe the smallness of it to me. Then I will look at them with a straight face and say, "Oh! Why don't you give that to her! (My daughter) It's small. That amount can't hurt her. Right?" They never do get it.

"Can't you just pick it off?"

I have even been laughed at when it comes to cross contamination. At family dinners, people will pass plates and bowls of things we can't have over our plates or expect us to handle those foods and get all pissy if a little of the food lands on our plate or gets on our hands. They do think we are being paranoid.

On of the biggest beefs for myself is that my mom expects me to serve up cake, ice cream and pie for family parties. I have a severe egg intolerance. Eggs make me so ill I will never ever eat anything that I think even might contain them. And these things almost always contain egg. I don't eat these or any dessert. So I don't feel I should have to be handling them.

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You are not alone. My daughter and I both have food intolerances. We are learning to adjust to our new ones because they do change over time. For us anyway...

My own mom has them also but refuses to believe it. She has been tested. She will eat what she is not supposed to. Get sick. Then want sympathy. I believe that my dad has them too. He is constantly sick. I believe that my brother also has them because he gets sick after he eats certain things. The weird thing is they all keep eating that which makes them sick.

Yeah. My mom is actually eating gluten-free, but I guess she doesn't react to CC the way I apparently do. Either that or she avoids CC so well that she hasn't encountered it, I don't really know. :unsure: To be fair, she did finally clean the toaster oven after I convinced her to. I'm realizing that it's probably hard for her to accept that I'm sick and to feel like she can't fix it, and that may be part of why she and my other family are acting this way.

I have other relatives that I am 99% sure have gluten intolerance but they keep eating gluten even though they have worse problems than I do. It's their choice. I have read that wheat can be addictive, like an opiate - I was definitely addicted to it before stopping gluten. No exaggeration, almost everything I ate was made of wheat. I had to stop eating it completely in order to start liking other foods. That could be a factor in some people's denial.

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:) Thank you so much for being honest and so forthcoming about how you are feeling. You are sane and you are brave. I appreciate your post so much. I am the mother of fraternal twin girls who will likely be confirmed Celiac within a few days. I will carry your thoughts, feelings, and experiences forward with me as I help my dear little ones navigate the world ahead of them.

I hope that in addition to knowing you always have comfort and support from this amazing online community, I hope that you know that you are also making the world a better place!

Thank you!

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Finally I believed them, and even though I don't eat much gluten, my health has continued to spiral. Well in the last few weeks I have been back in the doctors office.... we have been looking at auto immune issues.

If you eat ANY gluten, you're health WILL continue to spiral. You need to be totally gluten free, 24/7.

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:) Thank you so much for being honest and so forthcoming about how you are feeling. You are sane and you are brave. I appreciate your post so much. I am the mother of fraternal twin girls who will likely be confirmed Celiac within a few days. I will carry your thoughts, feelings, and experiences forward with me as I help my dear little ones navigate the world ahead of them.

I hope that in addition to knowing you always have comfort and support from this amazing online community, I hope that you know that you are also making the world a better place!

Wow, thank you so much! You are very sweet to say that. I hope that you get the answers you need for your daughters.

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