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Do I sound like someone with celiac disease?

EmmaDilemma

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EmmaDilemma Newbie
EmmaDilemma
Posted

This is gonna be long! Hi, I'm Emma! 

I know that nothing short of getting tested will show for sure, and nobody but my doctor can tell me. All I'm asking for is opinions :) But in order for me to get a blood test I keep trying to explain my (extremely severe) fear of needles. I have to be heavily sedated and medicated in order to get it done and he won't move on from Valium which didn't work (and they gave me a big enough dose for a grown man, they said. It had no effect.) I asked people on quora about it and they all suggested like therapy and mental coaching but they don't understand that when I'm in that state I have physically hurt nurses, doctors, dentists- I can't be talked down at all and need to be sedated. Long story short, a blood test is a dream. 

My doctor also wants to check for anemia, hypothyroidism, PCOS, and something else I can't remember because of my symptoms. 

For starters, I know for a fact I'm gluten intolerant. It's a long story but I went on a pre-packaged gluten free meal diet for about four months and then when I went off it and had gluten it was like my entire brain swelled up. My partner said it was like I was emotionless. I couldn't think, or really put thoughts together. It felt like (and I literally did) I could stare at a wall with my mouth open drooling. It just dumbfounded me. I asked my gluten intolerant relative and she said I probably did have gluten intolerance. When I went back on my gluten free food for another three months, and then back off it again, and the same cotton-stuffed head feeling (among other things) came back, I knew it wasn't a fluke. Especially considering gluten was the only ingredient that changed when I did that diet. 

 

I've been extremely tired for my entire life, my doctors prescribed me adderall and Wellbutrin to keep me in a semi awake state. I've slept over 30- consecutive hours, and still woke up tired. This eased up with gluten free but considering I'm back eating gluten now (and have been for awhile...it's hard not to. I'm kind of gluten adapted at this point but can tell that a lot of thoughts are foggy and sort of out of reach. Not as clear as when I'm gluten free) my memory is kind of foggy and I can't recall if my sleep issues completely went away but I know they were a lot better. 

I have soft teeth, I get cavities from almost anything. I read that enamel erosion is common with celiac people. 

I read somewhere about skin elasticity with celiac disease. When I was growing up I got stretch marks really hardcore even though I was young and not severely obese (just a chubby kid. No reason for my skin to be so extreme. I'm just thinking there had to be another reason because kids have the most collagen in their skin, so why did mine tear so easily?) 

I have diagnosed depression, ADD, chronic fatigue and motion sickness (this doesn't necessarily have anything to do with gluten intolerance I just notice it eases up as well when I take gluten away.) 

it seems like no matter what supplements I take or changes I make nothing eases my symptoms but things really improve without gluten. 

As for digestive issues, those cleared up with gluten free too but considering I only tried gluten free when I was 20 (22 in two weeks), most of my life has been bad digestive issues so I don't actually know what's normal and what's not. 

Also, my dad (who I've always been more similar to in terms of genetics.) had a camera thing in his intestines done, and his results were what the doctors said were "irritation (I can't remember the word, I think it was irritation) consistent with celiac disease." 

This is all I can remember for now. Does anyone have any thoughts?

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VLG Newbie
VLG
Posted

I have a question. If you feel better eating gluten-free, why do you continue to eat gluten? 

EmmaDilemma Newbie
EmmaDilemma
Posted
  • Author
42 minutes ago, VLG said:

I have a question. If you feel better eating gluten-free, why do you continue to eat gluten? 

Hello! 

If im being honest I've always had trouble withholding from binge eating, and for a long time I was on Keto, which made me not hungry, and when I went off it I kind of ate everything in my path, and here I am. Haven't been able to stop myself yet and don't really care enough about how I feel, physically or otherwise, to fix it. Keto was independent of gluten free so I'm just kind of stuck until I can manage to get back into keto. 

cyclinglady Grand Master
cyclinglady
Posted
18 hours ago, EmmaDilemma said:

This is gonna be long! Hi, I'm Emma! 

I know that nothing short of getting tested will show for sure, and nobody but my doctor can tell me. All I'm asking for is opinions :) But in order for me to get a blood test I keep trying to explain my (extremely severe) fear of needles. I have to be heavily sedated and medicated in order to get it done and he won't move on from Valium which didn't work (and they gave me a big enough dose for a grown man, they said. It had no effect.) I asked people on quora about it and they all suggested like therapy and mental coaching but they don't understand that when I'm in that state I have physically hurt nurses, doctors, dentists- I can't be talked down at all and need to be sedated. Long story short, a blood test is a dream. 

My doctor also wants to check for anemia, hypothyroidism, PCOS, and something else I can't remember because of my symptoms. 

For starters, I know for a fact I'm gluten intolerant. It's a long story but I went on a pre-packaged gluten free meal diet for about four months and then when I went off it and had gluten it was like my entire brain swelled up. My partner said it was like I was emotionless. I couldn't think, or really put thoughts together. It felt like (and I literally did) I could stare at a wall with my mouth open drooling. It just dumbfounded me. I asked my gluten intolerant relative and she said I probably did have gluten intolerance. When I went back on my gluten free food for another three months, and then back off it again, and the same cotton-stuffed head feeling (among other things) came back, I knew it wasn't a fluke. Especially considering gluten was the only ingredient that changed when I did that diet. 

 

I've been extremely tired for my entire life, my doctors prescribed me adderall and Wellbutrin to keep me in a semi awake state. I've slept over 30- consecutive hours, and still woke up tired. This eased up with gluten free but considering I'm back eating gluten now (and have been for awhile...it's hard not to. I'm kind of gluten adapted at this point but can tell that a lot of thoughts are foggy and sort of out of reach. Not as clear as when I'm gluten free) my memory is kind of foggy and I can't recall if my sleep issues completely went away but I know they were a lot better. 

I have soft teeth, I get cavities from almost anything. I read that enamel erosion is common with celiac people. 

I read somewhere about skin elasticity with celiac disease. When I was growing up I got stretch marks really hardcore even though I was young and not severely obese (just a chubby kid. No reason for my skin to be so extreme. I'm just thinking there had to be another reason because kids have the most collagen in their skin, so why did mine tear so easily?) 

I have diagnosed depression, ADD, chronic fatigue and motion sickness (this doesn't necessarily have anything to do with gluten intolerance I just notice it eases up as well when I take gluten away.) 

it seems like no matter what supplements I take or changes I make nothing eases my symptoms but things really improve without gluten. 

As for digestive issues, those cleared up with gluten free too but considering I only tried gluten free when I was 20 (22 in two weeks), most of my life has been bad digestive issues so I don't actually know what's normal and what's not. 

Also, my dad (who I've always been more similar to in terms of genetics.) had a camera thing in his intestines done, and his results were what the doctors said were "irritation (I can't remember the word, I think it was irritation) consistent with celiac disease." 

This is all I can remember for now. Does anyone have any thoughts?

There are over 200 symptoms attributed to celiac disease.  The problem is these symptoms over overlap  with other illnesses.  Based on what you stated, having a blood test or endoscopy is out.  What does your doctor say?  It sounds like it would be hard to adhere to a diet or even get medication (say, if you were hypothyroid or needed cancer treatment), if you can not do a blood draw or get an IV.    Maybe you should ask for a referral to see a psychiatrist to help you resolve your needle fear.  

EmmaDilemma Newbie
EmmaDilemma
Posted
  • Author
44 minutes ago, cyclinglady said:

There are over 200 symptoms attributed to celiac disease.  The problem is these symptoms over overlap  with other illnesses.  Based on what you stated, having a blood test or endoscopy is out.  What does your doctor say?  It sounds like it would be hard to adhere to a diet or even get medication (say, if you were hypothyroid or needed cancer treatment), if you can not do a blood draw or get an IV.    Maybe you should ask for a referral to see a psychiatrist to help you resolve your needle fear.  

If I thought celiac was what I had, it would be easier for me to get myself into ketosis. Just by saying hey there's a reason you should do this. Gluten intolerance is one thing, knowing what's wrong with me would be another. 

For people with fears like mine, therapy doesn't work. I have tried. And my doctor won't move past Valium for whatever reason. So that whole trail is out. If nobody has an answer for me that's fine. Worth a shot asking. 

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