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Family Says I'm Paranoid And Should Go Back To Eating Gluten


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#1 llama3

 
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Posted 18 March 2012 - 04:14 PM

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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#2 Skylark

 
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Posted 18 March 2012 - 04:47 PM

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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#3 psawyer

 
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Posted 18 March 2012 - 04:56 PM

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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Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
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#4 llama3

 
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Posted 18 March 2012 - 05:25 PM

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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#5 Skylark

 
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Posted 18 March 2012 - 07:10 PM

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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#6 Jestgar

 
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Posted 18 March 2012 - 07:57 PM

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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#7 ravenwoodglass

 
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Posted 19 March 2012 - 03:07 AM

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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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#8 llama3

 
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Posted 19 March 2012 - 06:06 AM

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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#9 mommida

 
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Posted 19 March 2012 - 06:35 AM

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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#10 Googles

 
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Posted 19 March 2012 - 07:47 AM

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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#11 llama3

 
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Posted 19 March 2012 - 08:20 AM

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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#12 kareng

 
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Posted 19 March 2012 - 08:36 AM

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.curecelia...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 persons age at diagnosis, some problems, such as delayed growth and tooth discoloration, may not improve."
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#13 Darn210

 
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Posted 19 March 2012 - 09:06 AM

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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#14 IrishHeart

 
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Posted 19 March 2012 - 10:27 AM

(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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#15 llama3

 
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Posted 19 March 2012 - 06:24 PM

(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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