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Weight gain, insomnia, highest genetic marker waiting for biopsy


Mer123

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Mer123 Apprentice

I've read countless times of undiagnosed Celiacs losing weight or being unable to gain and retain weight.  In my own case however in the year leading up to my own genetic test, (highest possible markers for celiac disease) I had many symptoms such as a persistent fungal infections, rotting teeth, rashes and edema and although I have to continue to eat gluten though while I wait for the biopsy, of all the symptoms............. the ones that really get my goat are the mysterious chronic weight gain (I gained 3 and half stone or 24.5 kilos in 8 months) and chronic insomnia (most nights I get 2 or three hours of poor quality sleep) I wouldn't even have thought (before this) it was possible to exist on so little sleep.  Posts from others about weight loss following a gluten free diet, has given me hope that I will lose the excessive weight once I am able to stop eating gluten but what of the insomnia? I went to the doctor who prescribed melantonin but its made no difference, I'm desperate and considering getting a script for some harder sleeping pills, I'm wondering is this even a symptom of celiac or something else again?


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DJFL77I Experienced
10 hours ago, Mer123 said:

such as a persistent fungal infections

 

I had a constantly recurring fungal infection on my skin in the palm area of my hand...  after being diagnosed and going gluten free..  it's never returned...

For sleep try taking Magnesium before bed...

But sleep should improve after going gluten free too.

Scott Adams Grand Master

Insomnia would not be a typical symptom of celiac disease, but in some people celiac disease manifests itself as a nerve disease, and some people can get ataxia, seizures, headaches, etc. It's possible that it is related, and if so, it should get better after time on a gluten-free diet. Have you tried exercise and meditation?

 

  • 2 months later...
Mer123 Apprentice
On 12/9/2020 at 10:23 PM, DJFL77I said:

 

I had a constantly recurring fungal infection on my skin in the palm area of my hand...  after being diagnosed and going gluten free..  it's never returned...

For sleep try taking Magnesium before bed...

But sleep should improve after going gluten free too.

thanks for that I've just had the biopsy about two weeks ago, I haven't had any gluten since, there was an immediate and marked difference with the insomnia, I haven't had any trouble sleeping since (I've thrown away that Zoplicone, although not even they worked in the end)..........more or less everything seems to be coming right the edema, diet resistant obesity (I've lost some kilos) the only thing that isn't going is that fungal rash in fact it seems to be getting worse.......I take pre- and pro-biotics I guess you can't get everything all at once

Scott Adams Grand Master

It's great to hear that you are on the road to recovery after going gluten-free. The average time to recovery is 2 years, and this means being 100% gluten-free during that time, so it can take a while for some issues to resolve. Note that if you eat outside your home, for example in restaurants, the risk of cross-contamination is high.

The rash could be unrelated to celiac disease, especially if it is fungal as you describe. Dermatitis herpetiformis is the itchy rash and skin condition related to celiac disease that would go away on a gluten-free diet.

This article might be helpful:

 

MADMOM Community Regular
On 12/8/2020 at 6:12 PM, Mer123 said:

I've read countless times of undiagnosed Celiacs losing weight or being unable to gain and retain weight.  In my own case however in the year leading up to my own genetic test, (highest possible markers for celiac disease) I had many symptoms such as a persistent fungal infections, rotting teeth, rashes and edema and although I have to continue to eat gluten though while I wait for the biopsy, of all the symptoms............. the ones that really get my goat are the mysterious chronic weight gain (I gained 3 and half stone or 24.5 kilos in 8 months) and chronic insomnia (most nights I get 2 or three hours of poor quality sleep) I wouldn't even have thought (before this) it was possible to exist on so little sleep.  Posts from others about weight loss following a gluten free diet, has given me hope that I will lose the excessive weight once I am able to stop eating gluten but what of the insomnia? I went to the doctor who prescribed melantonin but its made no difference, I'm desperate and considering getting a script for some harder sleeping pills, I'm wondering is this even a symptom of celiac or something else again?

don’t know if ur female but menopause comes with most of those symptoms - i just went through it and i have nights i can’t sleep days i still crave junk etc etc - i’m going through two things at once - i lost a few pounds initially but i’m roughly same weight i was when i started gluten free 5 weeks ago - i get hungrier faster 

Mer123 Apprentice
15 minutes ago, MADMOM said:

don’t know if ur female but menopause comes with most of those symptoms - i just went through it and i have nights i can’t sleep days i still crave junk etc etc - i’m going through two things at once - i lost a few pounds initially but i’m roughly same weight i was when i started gluten free 5 weeks ago - i get hungrier faster 

I am a female but I'm a bit too young to be going through menopause, I've stopped eating gluten for about three weeks now, I started after the biopsy which was positive for celiac and all its symptoms have are almost gone now..........the exact same thing happened about 7 years ago before I got a positive result on a celiac antibody test, but at that time a miscommunication between myself (whom had never heard of celiac disease at that time) and the nurse about gluten consumption before a biopsy resulted in a false negative on the biopsy (but I didn't know at that time there was such a thing) and I went back to eating gluten.............the first symptom (fungal rash) didn't start overnight but developed about 9 months afterwards and over 7 years every six months I was able to add a new bizarre  symptom to the list..............its been a crap 7 years having to live with them.......I really had to argue my case with the doctor in the end to stop trying to treat the symptoms rather than thier cause.........it was a battle because my symptoms were so atypical but she did the tests and made the referral in the end........I'm not even tempted to eat gluten now feeling this good it seems like a small price to pay


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MADMOM Community Regular
12 minutes ago, Mer123 said:

I am a female but I'm a bit too young to be going through menopause, I've stopped eating gluten for about three weeks now, I started after the biopsy which was positive for celiac and all its symptoms have are almost gone now..........the exact same thing happened about 7 years ago before I got a positive result on a celiac antibody test, but at that time a miscommunication between myself (whom had never heard of celiac disease at that time) and the nurse about gluten consumption before a biopsy resulted in a false negative on the biopsy (but I didn't know at that time there was such a thing) and I went back to eating gluten.............the first symptom (fungal rash) didn't start overnight but developed about 9 months afterwards and over 7 years every six months I was able to add a new bizarre  symptom to the list..............its been a crap 7 years having to live with them.......I really had to argue my case with the doctor in the end to stop trying to treat the symptoms rather than thier cause.........it was a battle because my symptoms were so atypical but she did the tests and made the referral in the end........I'm not even tempted to eat gluten now feeling this good it seems like a small price to pay

how fast did ur levels drop if i may ask? i’m only 5 weeks into this just got diagnosed and really didn’t have many of the GI symptoms at all - luckily i work for drs who sent me to their GI and i requested an endoscopy .  as far as ur insomnia i wouldn’t worry - my son is 18 and has same issue - i have him on decaf coffee now since he had anxiety attacks after drinking reg - and he’s sleeping better- try and have some chamomile tea at night it really helps 

Mer123 Apprentice

levels ? thanks for that oh yeah I like the coffee too (the strong stuff) my mother only let me drink tea I started when I left home but I limit it to two cups everyday........anymore and I become a nervous wreak, jumping at sudden sounds, irritable and bad tempered .........but surprisingly this isn't a symptom of celiac ; )

MADMOM Community Regular

id not drink a second cup too late in the day - see how you feel 

 

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