Waiting on an endoscopy with no time frame, but symptoms getting worse?

[GFinDC]

Hi Alexinferno,

IMHO with positive antibodies and symptom improvement on the gluten-free diet. I think you probably do have celiac disease.  Not eating gluten shouldn't make a difference for people without celiac disease.  They should feel the same.

Another thing that new gluten-free dieters often have problems with is dairy and oats.  They are sometimes hard to digest with a damaged gut.  So it might be good to cut them out also.  At least for the first few months of beginning the gluten-free diet.

People also may do better if they avoid sugar and carbs like rice and potatoes etc).  Our gut bacteria is often unsettled when first starting the gluten-free diet, and sugar and carbs feed bad bacteria and can cause symptoms.  Poor digestion of the sugar and carbs lets the bad bacteria multiply quickly.

I hope you feel better soon.

[trents]

  On 12/9/2020 at 9:18 AM, DJFL77I said:

dietitians are worthless...    they'll tell you to stop eating gluten

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All of them or just the one you had experience with in your celiac journey? That's a pretty broad swipe you made. They may be like doctors. Some doctors are up on celiac disease and some aren't. Some dieticians will have good knowledge on how to avoid gluten and some not. Some of them may have celiac disease themselves and have the personal experience and in depth knowledge of gluten hazards. But all in all a forum community like this one may be more helpful in educating those newly diagnosed with celiac disease than the average dietician.

[DJFL77I]

  On 12/9/2020 at 3:05 PM, trents said:

 But all in all a forum community like this one may be more helpful in educating those newly diagnosed with celiac disease than the average dietician.

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defnitely more helpful

[DJFL77I]

  On 12/9/2020 at 1:57 PM, GFinDC said:

 

People also may do better if they avoid sugar and carbs like rice and potatoes etc). 

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then what on earth are you supposed to eat

[Beverage]

  On 12/9/2020 at 6:54 PM, DJFL77I said:

then what on earth are you supposed to eat

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Real food, aka whole food.  Chicken, fish, beef, pork, lots of fresh veggies, a little fruit, nuts (I use nuts.com).  Look into Whole30 recipes.  I got tons of ideas from books from my dinky little local library before everything was shut down.  Now all that is available online from the library and various web sites.

[Clancy]

  On 12/8/2020 at 7:17 PM, AlexInferno said:

Diet has been okay, been a bit difficult but it’s definitely helped with the symptoms. Dr suggested that I can probably ask to be referred to a dietitian if I feel I’m struggling. Still heard nothing about my appointment. The formal diagnosis isn’t really for me, but for my record. Recently had an appointment to something unrelated, (also at a a health centre as my normal drs had no appointments left so not my usual dr) and they asked about allergies and as soon as I mentioned possible coeliacs, they asked if I had the endoscopy and when I said I was waiting for it still, they then said it was self-diagnosed. And after that the dr didn’t take me serious.

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Hi Alex, when I joined Ceoliac U.K., I got a phone appointment with a dietitian the next day which was really helpful, and worth the subscription fee alone. The printed materials and gluten-free resources were really helpful too. If you’re not a member already, I’d suggest joining up. I hope you get on with it all ok! 

[Kmorley]

  On 10/15/2020 at 3:36 PM, AlexInferno said:

So in August I did a blood test as I had, and still have severe fatigue. The nurse suggested to test for coeliacs, and ran it through the GP so I wouldn’t have to have more bloods done at a later date. They came back with a borderline positive for coeliacs, so my GP referred be for an endoscopy. They told me if I had not heard anything in 14 working days to let my GP know. When that time frame came and passed I let my GP know, and a few days later they sent me a message letting me know that I was in a waiting list with no time frame cause of the current circumstances and to let them know if my symptoms change or worse.

Since last seeing my GP, I’ve barely been able to eat cause of nausea and bloating making me feel full all the time, and I’m the last week I’ve been having pale, loose stool.

At this point I’m wondering how severe my symptoms would have to be before anything is done, as I’ve had severe stomach pains and low appetite for months but doctors don’t seem too bothered or concerned.

 

sorry if this is way too long, honestly not sure what to do at this point, as my GP has advised to keep gluten in my diet as it will be needed for when I do have my endoscopy.

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I was waiting from February for a date and finally had it in October but that is because my symptoms got worse. I am also from the UK. If you speak to the GP or have been put under a consultant like I had at the hospital you can explain your symptoms are getting worse and they will move you from the routine to urgent. I have to have more test done but still waiting for my letter with the notes on and the notes from the consultation/follow up on the 12th November.

 

I see your post is from a while ago and hopefully you have had some help or a biopsy by now.

[DJFL77I]

  On 12/9/2020 at 9:12 PM, Beverage said:

Real food, aka whole food.  Chicken, fish, beef, pork, lots of fresh veggies, .

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i do already..   I'm switching from white potatoes now back to only sweat potatoes..

[GFinDC]

  On 12/9/2020 at 6:54 PM, DJFL77I said:

then what on earth are you supposed to eat

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Dead animals, dead fish, veggies grown in the dirt or above the dirt, some nuts from trees and bushes and some fruit.  Some eggs too for good measure.

Edited December 12, 2020 by GFinDC

[DJFL77I]

  On 12/12/2020 at 1:57 PM, GFinDC said:

Dead animals, dead fish, veggies grown in the dirt or above the dirt, some nuts from trees and bushes and some fruit.  Some eggs too for good measure.

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Can't gain any weight on that 

[Scott Adams]

  On 12/12/2020 at 11:44 AM, DJFL77I said:

i do already..   I'm switching from white potatoes now back to only sweat potatoes..

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Sweet potatoes are a better option, as they are a complex carbohydrate and have lots of nutrition and fiber. One of the longest living populations on earth are on the island of Okinawa in Japan. They actually outlive those in the rest of Japan, who also have long live spans, but after comparing the diets of the regular Japanese vs. Okinawans they found that the primary difference is that those in Okinawa get most of their carbs from sweet potatoes, while the rest of Japanese get them from rice.