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new to gluten free ? undiagnosed but certain gluten is an issue

kittykrl

By kittykrl
in Dermatitis Herpetiformis

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kittykrl Newbie
kittykrl
Posted

Hi all , 

ive suffered with stomach issues and sever anxiety in the last couple of years ! I come from a strong family history of coeliacs , many other family members have it grandparents, aunties and cousins etc . i have had bloods done all negative but was especially miserable lately and decided to experiment and take gluten off the menu , i’d intolerance testing done a year or two ago it did suggest gluten as an issue but i hadn’t put much weight in it.  

However since going gluten free not only did the constant bloating and chest pain from trapped gas and belching disappear my stomach felt more comfortable and also my wheezy chest and permanent annoying cough all cleared within a week the only thing still troublesome is the anxiety and a rash i have had in the same time frame , but the rash is healing and not itchy like it was but slowly improved ! 

 

so i’m guessing from my experiment that gluten has definitely being causing issues  but to what extent i’d actually dread eating it again cause i don’t want all that back also at the same time missing the some of the foods even thought feeling better feels better than eating them . 

but as i say i’ve never been diagnosed with anything but i think my experiment is clearly proving that theses an issue . i know in order to get proper diagnosis i’d have to be eating gluten ! although i read somewhere that dermatologist can biopsy the rash if they suspect it’s gluten related which i think it is !

 

 

anyone have any idea if i’m on the right track or loosing my mind! 

kitty x 

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trents Grand Master
trents
Posted

Welcome to the forum, kitty!

I could be wrong but I think you might need to wait until a fresh outbreak of the rash before a skin biopsy would be valid when testing for DH. If you do have DH that is definitive for celiac disease. but because of your family history and your symptoms it sounds like given that you have celiac disease.

kittykrl Newbie
kittykrl
Posted
  • Author

oh really! i must look in to that for sure had no clue it would.be a definitive! i don’t know what’s going on other than i’m not suffering like i was while on gluten ! thanks so much for your reply ! 

Wheatwacked Veteran
Wheatwacked
Posted
(edited)

For your depression try increasing amounts of vitamin D until you feel better. It took me 10,000 iu a day. Get your blood tested for vitamin D and parathyroid hormone as soon as you can to see your baseline. There is a condition called Seasonal Affective Disorder that can be treated by light bars or drugs. Vitamin D and Depression: Where is all the Sunshine? 

While your tummy is happy feed those benificial bacteria with plenty of soluable fiber It's what they like to eat. Three teaspoons of Inulin has the same fiber as 100 grams of oatmeal, but only 15 calories versus oats 390 calories. 6 gml fiber vs. oats 66 gm carbs of which only 10 is fiber.

Be on the lookout for other vitamin and mineral deficiencies.

 

Edited by Wheatwacked
kittykrl Newbie
kittykrl
Posted
  • Author
11 hours ago, Wheatwacked said:

For your depression try increasing amounts of vitamin D until you feel better. It took me 10,000 iu a day. Get your blood tested for vitamin D and parathyroid hormone as soon as you can to see your baseline. There is a condition called Seasonal Affective Disorder that can be treated by light bars or drugs. Vitamin D and Depression: Where is all the Sunshine? 

While your tummy is happy feed those benificial bacteria with plenty of soluable fiber It's what they like to eat. Three teaspoons of Inulin has the same fiber as 100 grams of oatmeal, but only 15 calories versus oats 390 calories. 6 gml fiber vs. oats 66 gm carbs of which only 10 is fiber.

Be on the lookout for other vitamin and mineral deficiencies.

 

amazing! thank you so much , yes on the last few rounds of blood test over the years vitamin D was always low i was supplementing them for a while  but i must get back on that !  i have tried Anti Ds but i had a bad reaction to them they were making my system flood with serotonin so i put them in the bin. Fiber will be a huge one alright , even though i’m eating reasonably well far better than ever really but i’ve not figured out how to replace most my carbs , mainly relying on oats at the moment . thanks so much for your informative response x 

trents Grand Master
trents
Posted

Be aware that some celiacs react to the oat protein avenin like they do to gluten.

kittykrl Newbie
kittykrl
Posted
  • Author
2 minutes ago, trents said:

Be aware that some celiacs react to the oat protein avenin like they do to gluten.

yikes ! it’s a real minefield isn’t it ! 

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trents Grand Master
trents
Posted
1 minute ago, kittykrl said:

yikes ! it’s a real minefield isn’t it ! 

It can be, yes. Same for the dairy protein casein. 

And not only can there be an issue with the dairy protein casein but many celiacs are also lactose intolerant. The latter may improve with time and the healing of the gut.

Rhonda DeGrafft Newbie
Rhonda DeGrafft
Posted
On 8/27/2022 at 4:27 PM, kittykrl said:

Hi all , 

ive suffered with stomach issues and sever anxiety in the last couple of years ! I come from a strong family history of coeliacs , many other family members have it grandparents, aunties and cousins etc . i have had bloods done all negative but was especially miserable lately and decided to experiment and take gluten off the menu , i’d intolerance testing done a year or two ago it did suggest gluten as an issue but i hadn’t put much weight in it.  

However since going gluten free not only did the constant bloating and chest pain from trapped gas and belching disappear my stomach felt more comfortable and also my wheezy chest and permanent annoying cough all cleared within a week the only thing still troublesome is the anxiety and a rash i have had in the same time frame , but the rash is healing and not itchy like it was but slowly improved ! 

 

so i’m guessing from my experiment that gluten has definitely being causing issues  but to what extent i’d actually dread eating it again cause i don’t want all that back also at the same time missing the some of the foods even thought feeling better feels better than eating them . 

but as i say i’ve never been diagnosed with anything but i think my experiment is clearly proving that theses an issue . i know in order to get proper diagnosis i’d have to be eating gluten ! although i read somewhere that dermatologist can biopsy the rash if they suspect it’s gluten related which i think it is !

 

 

anyone have any idea if i’m on the right track or loosing my mind! 

kitty x 

Hi Kitty, I have a brother who has /had alot of the symptoms and issues you have and just to mention ever since he was little he's had "colitis" which is no walk in the park, but I feel he has Celiac as well he's been to so many Drs with nothing saying he has it. The last Dr immediately said it sounds like you have Celiac and in short we have stopped gluten in his diet and it's made a world of difference, but he has an issue when he eats to late and lays down he becomes violently ill, but not for hours and he wakes up sweating and just awful sick. They say that Celiac can go undiagnosed for years. Well my brother has had these stomach issues, acid reflux, colitis since he can remember. Stopping the gluten in his diet had to become a constant with no room for error. As well as no eating after 6 or 7 being the latest I watch what he goes through and I can say I'm so thankful. Good luck to you 

kittykrl Newbie
kittykrl
Posted
  • Author
27 minutes ago, Rhonda DeGrafft said:

Hi Kitty, I have a brother who has /had alot of the symptoms and issues you have and just to mention ever since he was little he's had "colitis" which is no walk in the park, but I feel he has Celiac as well he's been to so many Drs with nothing saying he has it. The last Dr immediately said it sounds like you have Celiac and in short we have stopped gluten in his diet and it's made a world of difference, but he has an issue when he eats to late and lays down he becomes violently ill, but not for hours and he wakes up sweating and just awful sick. They say that Celiac can go undiagnosed for years. Well my brother has had these stomach issues, acid reflux, colitis since he can remember. Stopping the gluten in his diet had to become a constant with no room for error. As well as no eating after 6 or 7 being the latest I watch what he goes through and I can say I'm so thankful. Good luck to you 

oh wow that’s amazing that he has some answers, yes if i eat too late i wake up choking on acid reflux which hopefully will not be an issue now too or at least be lessened too , i find even a small amount  gluten swells me up like a ballon , i mindlessly ate a handful of pringle’s the other day and by god i knew about it , so i’ve to be very strict i think on myself x hopefully he will feel tonnes better soon x 

 

 

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