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queensketch

Gluten sensitive or insane?

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Warning: fairly long post, but I have a long history with gluten. And I'm frustrated as hell.

As long as I can remember, I've had that "chicken skin" rash on the backs of my arms, and GI symptoms, which include:

Constipation

Diahrrea, especially after wheaty/dairy foods, like pizza

Extreme stomach bloating which made me look 6 months pregnant and start doing excessive, obsessive crunches starting when I was about 8 years old

As I got older, I started having emotional/mental symptoms, such as:

Depression, anxiety, brain fog, poor memory, social anxiety, and fatigue

Super tight muscles

Naturally, I've seen doctors who said I probably have IBS, go take some Immodium and have a nice life. I'd cry to my mom and other family members who thought I was full of it, which led to further emotional problems. When I was 20 years old (3 years ago) I discovered an article about gluten intolerance and just "KNEW" this was what was wrong with me. I cut out all gluten for about 6 months (so I thought, but looking back I was still occasionally eating things I didn't know contained gluten, and working in a bakery, so covered in flour) and I did get a LITTLE better. Because my symtpoms didn't totally go away, everyone in my life was basically accusing me of being a hypochondriac, and I wanted to be a "normal" 20 year old (beer & pizza), I said "F it" and when full force back into breads, pasta, cake and all that.

After doing this, I started having symptoms such as intense full-body aches and pains

Extreme flatulence seemingly all the time, especially in my sleep (according to my boyfriend, embarrassing!:o)

Worse bloating and way worse diahrrea

With all this going on, I think I was in denial. I was used to being picked on by family and coworkers and dismissed by doctors, so I convinced myself it was all in my head.

Fast forward 3 years, and I have the same symptoms, plus some new ones. Because the new ones aren't GI related, it took me a while to realize that they may be gluten - related. After realizing that they may be, I had this light bulb, "see, I do know my body, I was right all along" moment. These include:

Secondary amenorrhea (no period for over a year, and not pregnant)

Painful tingling and numbness in hands, especially at night

Very short temper 

I didn't have health insurance for a long time and finally got covered about 2 weeks ago. I visited a doctor, who when I told her all my symptoms and past experiences said, "it sounds like you have IBS", and offered me a prescription, which I did not take.:o:unsure: 

Part of me wonders how doctors can be so ignorant about nutrition and holistic treatment. The other part of me wonders if I'm just making this all up psychologically, I mean, she is the doctor. She did do bloodwork for celiac testing, only because I insisted upon it. After having been tested, I stopped gluten again, and never plan on touching it again. Honestly, I'm praying that the test comes back positive for celiac so I can stop feeling like a crazy person and dealing with insensitive people. If it comes back negative...I'm not sure. Like I said, I plan on keeping gluten out of my diet and seeing what happens this time. But I will be dissapointed and won't know how to explain my situation, not having been properly diagnosed by a doctor. Especially to my employer since there are aspects of my job I will no longer be comfortable doing due to flour exposure. I'm frustrated because I'm tired of being treated like nothing is wrong with me, like I'm just creating this whole thing because I *want* to be sick. No, I'm not projectile vomiting or taking weekly trips to the ER, and I'm thankful for that, but some things are not right with my health and I really feel as though they are connected!

Did anyone else go through something similar? Does anyone have any advice? Do my symptoms seem like a dead giveaway for gluten sensitivy, or am I a nut? I really appreciate all and any replies. I will update with my blood test results. Thanks for reading!

 

 

 

Edited by queensketch

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Do you know how many people could not get a diagnoses in a timely manner from doctors?  Articles ten years ago put an average of 10 years for Celiac diagnoses.  10 YEARS!

Doctors don't get paid by the insurance company if they don't write in a diagnoses.  So they write in in IBS as a diagnoses.

I won't even go into what a sad excuse for a doctor screwed up my testing and subsequently I do not have an "official" diagnoses for myself.

If gluten makes you sick, I suggest you don't eat it.

Edited by mommida
forgot a word

Michigan

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sorry you've been through all this. are you still planning to work in the bakery? I can't be around flour, I'm very sensitive. good luck! 


gluten free since 11/12  

dairy and soy free since 1/13

chocolate free since 6/14

 

I miss my chocolate!!!   but I'm not sick anymore, and that's what really matters  :)

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sorry you've been through all this. are you still planning to work in the bakery? I can't be around flour, I'm very sensitive. good luck! 

I'm no longer working in a bakery. But I work in the prepared foods dept. of a grocery store where one of many stations there is the pizza station where there's flour everywhere. I occasionally work this station, and when I asked my manager if I could no longer be scheduled there due to gluten sensitivity, he was...not very understanding.

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Do you know how many people could not get a diagnoses in a timely manner from doctors?  Articles ten years ago put an average of 10 years for Celiac diagnoses.  10 YEARS!

Doctors don't get paid by the insurance company if they don't write in a diagnoses.  So they write in in IBS as a diagnoses.

I won't even go into what a sad excuse for a doctor screwed up my testing and subsequently I do not have an "official" diagnoses for myself.

If gluten makes you sick, I suggest you don't eat it.

Thanks for your reply. You're so right, I felt as though I wasn't even being listened to as I listed off my symptoms, which weren't even entirely GI related. As soon as I said "constipation, bloating, and diahrrea" the doctor's ears turned off and "IBS" was all she could think.

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I'm so sorry you're going through this.  I can definitely relate.  Many, if not most, of us have been through similar experiences.  Your feelings, your symptoms, your frustrations are real.  Try not to "let"anyone dismiss you.  

You might have to change jobs so you are not in contact with gluten.  Many of us had to do this.

Very few doctors know much about Celiac.  You're going to have to get most of your support from within yourself and from this website.  Hopefully,your boyfriend will support you and learn along with you.

I wish you luck and strength.

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When my older brother was born, first of 7 children, he had projectile vomiting when he tried feeding from my mom’s breasts. So she started feeding him formula; which she did for all the other children. I believe she was told that my brother had Celiac disease.
then when he was in his 20’s he started showing signs of having psychological problems. He was diagnosed as having borderline Schizophrenia. He wouldn’t follow doctors suggestions and take meds for it. But he did start AA and stop drinking. His way of dealing with his hallucinations and crazy behavior that got him put into clinics several times. 
I’ve never shared this with him, but I bought a book on Schizophrenia and found, in the back, a story about a woman who had suffered from Schizophrenia for 40 years, until a doctor found out she was celiac. She was cured! 
Title of book: Surviving Schizophrenia, A Family Manual, E. Fuller Torrey, M.D. 1983
(of course now I can’t put my finger in the page where I originally found it) 
i have been wondering about my brother and a possible link to his now very manageable behavior and Celiac. I don’t think ge’s Ever addressed his diet.

 

 

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1 hour ago, Dmellin said:
When my older brother was born, first of 7 children, he had projectile vomiting when he tried feeding from my mom’s breasts. So she started feeding him formula; which she did for all the other children. I believe she was told that my brother had Celiac disease.
then when he was in his 20’s he started showing signs of having psychological problems. He was diagnosed as having borderline Schizophrenia. He wouldn’t follow doctors suggestions and take meds for it. But he did start AA and stop drinking. His way of dealing with his hallucinations and crazy behavior that got him put into clinics several times. 
I’ve never shared this with him, but I bought a book on Schizophrenia and found, in the back, a story about a woman who had suffered from Schizophrenia for 40 years, until a doctor found out she was celiac. She was cured! 
Title of book: Surviving Schizophrenia, A Family Manual, E. Fuller Torrey, M.D. 1983
(of course now I can’t put my finger in the page where I originally found it) 
i have been wondering about my brother and a possible link to his now very manageable behavior and Celiac. I don’t think ge’s Ever addressed his diet.

 

 

Great post, but this is a older thread. Yeah some of us have neurological manifestations of symptoms. I myself had gluten ataxia with, looping thoughts would drive me insane, fog, inability to think of some things, coupled with pain and being uncomfortable leads to mood swings and snapping like Mr. Hyde. Found other triggers that compounded the issues like reactions to artificial sweeteners that also caused major mood swings and anger.

Perhaps you should start a new thread about this book, about you brother, and you can start on a road of trying to help him and get him diagnosed. They do a simple blood test if he is eating gluten, I wish you luck and might you be blessed to find this is his issue. https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/screening/


Diagnosed Issues
Celiac (Gluten Ataxia, and Villi Damage dia. 2014, Villi mostly healed on gluten-free diet 2017 confirmed by scope)
Ulcerative Colitis (Dia, 2017), ADHD, Bipolar, Asperger Syndrome (form of autism)
Allergies Corn, Whey
Sensitivities/Intolerances
Peanuts (resolved 2019), Cellulose Gel, Lactose, Soy, Yeast
Olives (Seems to have resolved or gone mostly away as of Jan, 2017), Sesame (Gone away as of June 2017, still slight Nausea)
Enzyme issues with digesting some foods I have to take Pancreatic Enzymes Since mine does not work right, additional food prep steps also
Low Tolerance for sugars and carbs (Glucose spikes and UC Flares)
Occupation Gluten Free Bakery, Paleo Based Chef/Food Catering

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