Please help - at wits end

[HollyWhispersWildly]

Hello all. This is my first post. Apologies in advance if it’s long. 
 

I don’t even know what I’m asking - I just need to vent. Get it all out there and if anyone can cast any light on anything I say I’d appreciate it more than you’d ever know. 
 

Last year at age 42 I was diagnosed with ADHD. The main symptoms for me were brain fog, severe exhaustion, lack of motivation. I had been on Prozac for depression since I was 20, same kinds of symptoms. Never had to take another Prozac after I started the medication for ADHD; in my opinion it never was depression. At this stage I don’t think it’s ADHD either, I think it’s Celiacs, but I’ll explain. 
 

The medication for ADHD is basically amphetamine with something added to make it last all day. And it was life changing for me. It gave me the energy I never had before. For a while. Then I developed oral thrush, and it never went away despite a bucket load of Fluconazole, Nystatin, etc. This turned into Burning Mouth Syndrome. Permanent coating on tongue, extreme pain in mouth most of the time. The thrush has now gone but the pain in my mouth remains. 

Something happened to me those first few months on the ADHD meds. My lips would turn blue, I was covered in bruises, I couldn’t eat or sleep. I came off them for a while but the burning mouth remained. My iron levels, which had always been a problem, wouldn’t come back up at all despite being prescribed Ferrous Sulfate. The damage was done. 
 

Months of research and being passed from one uninterested doctor to another during a pandemic eventually led me to realise I had silent reflux and the burning in my mouth is pepsin. Probably caused by something I’m eating that my body doesn’t like. In desperation I paid for hair strand food sensitivity tests (not completely accurate, I know) which came back as highly sensitive to gluten, dairy and a few other bits and bobs. 
 

In April of this year I cut out gluten for nine days. I felt different. The diarrhoea that got me out of bed every morning my whole life went. The flatulence I had always struggled with disappeared overnight. I had a rough couple of days - headachey - and then after two days I just felt just more alive. My burning mouth didn’t go, but it eased. My friend who is celiac told me she thought I had it. I looked into it and it was uncanny, right down to the ADHD diagnosis. I’d spent most of my life tired, falling asleep at work, low on iron, just always feeling like I was being dragged down by some invisible force. I had thrush all the time, I was pale. However; I never had trouble conceiving, I’m a good height, weight etc. No tummy pain, often uncomfortable but nothing worth mentioning. 

I read that I needed to be eating gluten to get tested and after 9 days, I started eating it again. That was on 16th May this year and since then it’s like I’m falling to bits. By the end of the following day, I couldn’t string a sentence together. My reflux was so bad that my tongue bled. My joints ached, I very nearly had accidents if I left the house. It’s settled down but not completely. It’s much worse than it ever was. When I eat, the food just sits there and I feel nauseous all the time. I’m so lethargic I barely move. I have had to go off sick from work. I itch all over when I try and sleep.

I checked a 23&me report I got done last year and I have the DQ8 gene. Nobody in my family has been diagnosed with celiacs but my sister has IBS.  She’s 12 years younger than me and if she eats gluten, she gets more severe physical symptoms than me, pains and immediate diarrhoea but her doctor has never tested her for Celiac. She was also diagnosed with ADHD last year. My dad at age 70 has said he thinks he is autistic and it was overlooked. He and my brother both have digestion issues but they just take Lansoprazole and suffer. I don’t know the rest of my dads family, I never met them. But I know that between our kids, there is Autism, ADHD, asthma and type 1 diabetes. I think it’s the gluten, I really do. 
 

I just wondered if you agreed with me. Does it sound like Celiacs? My blood test which was done on 21st May (5 days after being back on gluten) came back negative, I have an endoscopy and colonoscopy booked for 8th July. I am scared in case it isn’t Celiac. 

[HollyWhispersWildly]

22 minutes ago, HollyWhispersWildly said:

Hello all. This is my first post. Apologies in advance if it’s long. 
 

I don’t even know what I’m asking - I just need to vent. Get it all out there and if anyone can cast any light on anything I say I’d appreciate it more than you’d ever know. 
 

Last year at age 42 I was diagnosed with ADHD. The main symptoms for me were brain fog, severe exhaustion, lack of motivation. I had been on Prozac for depression since I was 20, same kinds of symptoms. Never had to take another Prozac after I started the medication for ADHD; in my opinion it never was depression. At this stage I don’t think it’s ADHD either, I think it’s Celiacs, but I’ll explain. 
 

The medication for ADHD is basically amphetamine with something added to make it last all day. And it was life changing for me. It gave me the energy I never had before. For a while. Then I developed oral thrush, and it never went away despite a bucket load of Fluconazole, Nystatin, etc. This turned into Burning Mouth Syndrome. Permanent coating on tongue, extreme pain in mouth most of the time. The thrush has now gone but the pain in my mouth remains. 

Something happened to me those first few months on the ADHD meds. My lips would turn blue, I was covered in bruises, I couldn’t eat or sleep. I came off them for a while but the burning mouth remained. My iron levels, which had always been a problem, wouldn’t come back up at all despite being prescribed Ferrous Sulfate. The damage was done. 
 

Months of research and being passed from one uninterested doctor to another during a pandemic eventually led me to realise I had silent reflux and the burning in my mouth is pepsin. Probably caused by something I’m eating that my body doesn’t like. In desperation I paid for hair strand food sensitivity tests (not completely accurate, I know) which came back as highly sensitive to gluten, dairy and a few other bits and bobs. 
 

In April of this year I cut out gluten for nine days. I felt different. The diarrhoea that got me out of bed every morning my whole life went. The flatulence I had always struggled with disappeared overnight. I had a rough couple of days - headachey - and then after two days I just felt just more alive. My burning mouth didn’t go, but it eased. My friend who is celiac told me she thought I had it. I looked into it and it was uncanny, right down to the ADHD diagnosis. I’d spent most of my life tired, falling asleep at work, low on iron, just always feeling like I was being dragged down by some invisible force. I had thrush all the time, I was pale. However; I never had trouble conceiving, I’m a good height, weight etc. No tummy pain, often uncomfortable but nothing worth mentioning. 

I read that I needed to be eating gluten to get tested and after 9 days, I started eating it again. That was on 16th May this year and since then it’s like I’m falling to bits. By the end of the following day, I couldn’t string a sentence together. My reflux was so bad that my tongue bled. My joints ached, I very nearly had accidents if I left the house. It’s settled down but not completely. It’s much worse than it ever was. When I eat, the food just sits there and I feel nauseous all the time. I’m so lethargic I barely move. I have had to go off sick from work. I itch all over when I try and sleep.

I checked a 23&me report I got done last year and I have the DQ8 gene. Nobody in my family has been diagnosed with celiacs but my sister has IBS.  She’s 12 years younger than me and if she eats gluten, she gets more severe physical symptoms than me, pains and immediate diarrhoea but her doctor has never tested her for Celiac. She was also diagnosed with ADHD last year. My dad at age 70 has said he thinks he is autistic and it was overlooked. He and my brother both have digestion issues but they just take Lansoprazole and suffer. I don’t know the rest of my dads family, I never met them. But I know that between our kids, there is Autism, ADHD, asthma and type 1 diabetes. I think it’s the gluten, I really do. 
 

I just wondered if you agreed with me. Does it sound like Celiacs? My blood test which was done on 21st May (5 days after being back on gluten) came back negative, I have an endoscopy and colonoscopy booked for 8th July. I am scared in case it isn’t Celiac. 

I also wanted to add that I was about 13 the first time someone told me I had bad breath. I was horrified and became a little obsessed with brushing my teeth, chewing gum and avoiding things like onion and garlic. My ex husband used to tell me quite often and I couldn’t understand because my oral hygiene is so good, I never got cavaties. My dad and my brother both have terrible breath. My sister says she does but I’ve never smelled it. 
 

I also don’t understand the connection between the symptoms I had from being a teenager to them all being accelerated last year - the ADHD meds can cause reflux - did it maybe push my gut over the edge? And it’s definitely got worse again since going gluten-free, even though it was just for 9 days. If I do have celiac, does this mean I had it from being a teenager as that’s when my mild symptoms started? Or does it start off to a lesser degree and the ADHD meds were the ‘stress event’ that turned it into full blown celiac? I don’t really understand. 

[trents]

3 hours ago, HollyWhispersWildly said:

Hello all. This is my first post. Apologies in advance if it’s long. 
 

I don’t even know what I’m asking - I just need to vent. Get it all out there and if anyone can cast any light on anything I say I’d appreciate it more than you’d ever know. 
 

Last year at age 42 I was diagnosed with ADHD. The main symptoms for me were brain fog, severe exhaustion, lack of motivation. I had been on Prozac for depression since I was 20, same kinds of symptoms. Never had to take another Prozac after I started the medication for ADHD; in my opinion it never was depression. At this stage I don’t think it’s ADHD either, I think it’s Celiacs, but I’ll explain. 
 

The medication for ADHD is basically amphetamine with something added to make it last all day. And it was life changing for me. It gave me the energy I never had before. For a while. Then I developed oral thrush, and it never went away despite a bucket load of Fluconazole, Nystatin, etc. This turned into Burning Mouth Syndrome. Permanent coating on tongue, extreme pain in mouth most of the time. The thrush has now gone but the pain in my mouth remains. 

Something happened to me those first few months on the ADHD meds. My lips would turn blue, I was covered in bruises, I couldn’t eat or sleep. I came off them for a while but the burning mouth remained. My iron levels, which had always been a problem, wouldn’t come back up at all despite being prescribed Ferrous Sulfate. The damage was done. 
 

Months of research and being passed from one uninterested doctor to another during a pandemic eventually led me to realise I had silent reflux and the burning in my mouth is pepsin. Probably caused by something I’m eating that my body doesn’t like. In desperation I paid for hair strand food sensitivity tests (not completely accurate, I know) which came back as highly sensitive to gluten, dairy and a few other bits and bobs. 
 

In April of this year I cut out gluten for nine days. I felt different. The diarrhoea that got me out of bed every morning my whole life went. The flatulence I had always struggled with disappeared overnight. I had a rough couple of days - headachey - and then after two days I just felt just more alive. My burning mouth didn’t go, but it eased. My friend who is celiac told me she thought I had it. I looked into it and it was uncanny, right down to the ADHD diagnosis. I’d spent most of my life tired, falling asleep at work, low on iron, just always feeling like I was being dragged down by some invisible force. I had thrush all the time, I was pale. However; I never had trouble conceiving, I’m a good height, weight etc. No tummy pain, often uncomfortable but nothing worth mentioning. 

I read that I needed to be eating gluten to get tested and after 9 days, I started eating it again. That was on 16th May this year and since then it’s like I’m falling to bits. By the end of the following day, I couldn’t string a sentence together. My reflux was so bad that my tongue bled. My joints ached, I very nearly had accidents if I left the house. It’s settled down but not completely. It’s much worse than it ever was. When I eat, the food just sits there and I feel nauseous all the time. I’m so lethargic I barely move. I have had to go off sick from work. I itch all over when I try and sleep.

I checked a 23&me report I got done last year and I have the DQ8 gene. Nobody in my family has been diagnosed with celiacs but my sister has IBS.  She’s 12 years younger than me and if she eats gluten, she gets more severe physical symptoms than me, pains and immediate diarrhoea but her doctor has never tested her for Celiac. She was also diagnosed with ADHD last year. My dad at age 70 has said he thinks he is autistic and it was overlooked. He and my brother both have digestion issues but they just take Lansoprazole and suffer. I don’t know the rest of my dads family, I never met them. But I know that between our kids, there is Autism, ADHD, asthma and type 1 diabetes. I think it’s the gluten, I really do. 
 

I just wondered if you agreed with me. Does it sound like Celiacs? My blood test which was done on 21st May (5 days after being back on gluten) came back negative, I have an endoscopy and colonoscopy booked for 8th July. I am scared in case it isn’t Celiac. 

Holly, welcome to the forum!

Once you have been off gluten for a significant period of time and then go back on, say before testing, symptoms are typically much worse than they originally were.

You may have NCGS (Non Celiac Gluten Sensitivity) which gives most of the same symptoms and most of the same health risks but for which there is currently no diagnostic test. It is diagnosed from the symptoms and from improvement in symptoms once going off gluten.

[HollyWhispersWildly]

40 minutes ago, trents said:

Holly, welcome to the forum!

Once you have been off gluten for a significant period of time and then go back on, say before testing, symptoms are typically much worse than they originally were.

You may have NCGS (Non Celiac Gluten Sensitivity) which gives most of the same symptoms and most of the same health risks but for which there is currently no diagnostic test. It is diagnosed from the symptoms and from improvement in symptoms once going off gluten.

Hi, what is it that makes you think I might have NCGS rather than Celiac?

[trents]

"My blood test which was done on 21st May (5 days after being back on gluten) came back negative,"

The test could be negative because you were only back on gluten for 5 days. For the blood test, the recommended "gluten challenge" is 6-8 weeks of consuming gluten daily in the amount equivalent to two slices of wheat bread. For the endoscopy/biopsy the guidelines specify at least two weeks of gluten challenge before the procedure. But it is also possible that the blood test was negative because you don't have celiac disease but gluten sensitivity. And if the endoscopy/biopsy is negative after the appropriate length of gluten challenge, then I would conclude NCGS.

[HollyWhispersWildly]

27 minutes ago, trents said:

"My blood test which was done on 21st May (5 days after being back on gluten) came back negative,"

The test could be negative because you were only back on gluten for 5 days. For the blood test, the recommended "gluten challenge" is 6-8 weeks of consuming gluten daily in the amount equivalent to two slices of wheat bread. For the endoscopy/biopsy the guidelines specify at least two weeks of gluten challenge before the procedure. But it is also possible that the blood test was negative because you don't have celiac disease but gluten sensitivity. And if the endoscopy/biopsy is negative after the appropriate length of gluten challenge, then I would conclude NCGS.

Ok. Yes I’m sure the endoscopy and colonoscopy will tell me one way or the other. Have read a lot about people who’s bloods were not correct. I hope this is the case for me. Although I guess NCGS is the better option, but I kind of want a proper diagnosis so I can say for sure what is making me so ill. 

[trents]

Understood. But realize the antidote is the same for NCGS as it is for celiac disease, i.e., total elimination of gluten from the diet. And it seems to me you already demonstrated that gluten is the issue one way or another. Practically speaking, there's not much difference.

[HollyWhispersWildly]

I just cannot wait to start feeling better! Two weeks to go! 

[Wheatwacked]

7 hours ago, HollyWhispersWildly said:

I itch all over when I try and sleep.

Try a hot shower or bath at bedtime. It helps me. I rinse with Listerine then brush with a $15 throwaway electric spin brush. The antiplaque mouthwash softens the plaque so the brush is more effective even without abrasive toothpaste. Image sandpapering your car to keep it clean. I was put on coffee in sixth grade for ADD. I still need a coffee at bedtime. In 1976 when my 6 month old son was diagnosed Celiac, the doctot told us that by first grade the teacher will be begging us to put him on Ritalin, and so it happened. Celiac is always there but until you eliminate gluten you don't see the connections, largely because of advertising. Where would Prilosec be without wheat. If your gut is intact, you won't have nutrient deficiencies because of it, but vitamin and mineral deficiencies are rampant  in the general population; many foods that you will delete have mandated added supplements and you may have to compensate. Don't doubt yourself, you've already seen improvement on GFD. 'We're like salmon swimming upstream in a sea of sceptics. 

[Scott Adams]

If going gluten-free has offered you such obvious and dramatic relief from your symptoms, and eating it is causing you so many serious health issues, can I ask why you feel the need to get the formal diagnosis? You may have celiac disease, as you do have the genetic DQ8 marker for it, and have symptoms that have gone away when you went gluten-free, but to get the piece of paper from your doctor that says you actually have it would require weeks of eating a lot of gluten daily.

I don't want to discourage you from finding the truth, but to me it sounds like you've already discovered that you are gluten sensitive.

[HollyWhispersWildly]

11 hours ago, Scott Adams said:

If going gluten-free has offered you such obvious and dramatic relief from your symptoms, and eating it is causing you so many serious health issues, can I ask why you feel the need to get the formal diagnosis? You may have celiac disease, as you do have the genetic DQ8 marker for it, and have symptoms that have gone away when you went gluten-free, but to get the piece of paper from your doctor that says you actually have it would require weeks of eating a lot of gluten daily.

I don't want to discourage you from finding the truth, but to me it sounds like you've already discovered that you are gluten sensitive.

Hi. A few reasons why; 

- if it’s celiac rather than just an intolerance, I will need to be much more careful, separate utensils, cooking areas etc. Which is going to be really difficult, I have a very small kitchen and am a single mum to four kids. It would cause hassle that if I was merely intolerant, I could avoid. If the consequences of eating gluten were just feeling poorly as opposed to doing myself long term damage, I’m not going to go to those extremes. That’s how I feel at the minute, anyway. I guess things might change after I get ‘glutened’ for the first time after going gluten-free long term! 
- my 13 year old daughter has type 1 diabetes and if I have celiac I want to know so if she starts showing similar symptoms, we can assume she also has it
- here in the UK, with an official diagnosis, companies like care homes are legally obliged to give you a gluten-free meal. With an intolerance, you’re less likely to be taken seriously. 

[Wheatwacked]

The prevalence of celiac disease in people with Type 1 diabetes is about 6% worldwide.https://gluten.org/2019/10/17/diabetes-and-celiac-disease/

[trents]

6 hours ago, HollyWhispersWildly said:

Hi. A few reasons why; 

- if it’s celiac rather than just an intolerance, I will need to be much more careful, separate utensils, cooking areas etc. Which is going to be really difficult, I have a very small kitchen and am a single mum to four kids. It would cause hassle that if I was merely intolerant, I could avoid. If the consequences of eating gluten were just feeling poorly as opposed to doing myself long term damage, I’m not going to go to those extremes. That’s how I feel at the minute, anyway. I guess things might change after I get ‘glutened’ for the first time after going gluten-free long term! 
- my 13 year old daughter has type 1 diabetes and if I have celiac I want to know so if she starts showing similar symptoms, we can assume she also has it
- here in the UK, with an official diagnosis, companies like care homes are legally obliged to give you a gluten-free meal. With an intolerance, you’re less likely to be taken seriously. 

No so, apart from damage to the villi which isn't a feature of gluten "intolerance." That's why I don't like the term "intolerance" as opposed to "gluten sensitivity." NCGS is not the same at all as say, "lactose intolerance." Lactose intolerance just gives you gas, bloating and diarrhea but poses no long term health risks. Non celiac gluten sensitivity, on the other hand, poses many of the more serious long term health risks as celiac disease, including things like neurological damage and a host of other diseases related to a damaged immune system under toxic assault from gluten. What's more, NCGS may be a precursor to celiac disease. You are treating NSGS too lightly.

[Wheatwacked]

Although completely unfounded in any research that I am aware of, I believe that Type 1 Diabetes is caused by in utero effects of wheat. There aren't any statistics at all on NCGS and type 1. It makes simple sense to me that Type 1 would do better on GFD if only because it would lower the overall glycemic index. Most of the symptoms of Celiac over being blamed on the diabetes and so not being dealt with. My niece's husband is type 1 and they recently had twins. It sorrows me that he is displaying unrecognized signs like fatigue and laziness and unable to cope with caring for the kids.

[HollyWhispersWildly]

45 minutes ago, Wheatwacked said:

Although completely unfounded in any research that I am aware of, I believe that Type 1 Diabetes is caused by in utero effects of wheat. There aren't any statistics at all on NCGS and type 1. It makes simple sense to me that Type 1 would do better on GFD if only because it would lower the overall glycemic index. Most of the symptoms of Celiac over being blamed on the diabetes and so not being dealt with. My niece's husband is type 1 and they recently had twins. It sorrows me that he is displaying unrecognized signs like fatigue and laziness and unable to cope with caring for the kids.

Are you saying that my daughters diabetes could’ve been caused by my wheat intolerance? Well that’s certainly something to think about and quite scary!!! And to top it off, today she has told me she doesn’t know why but is unable to concentrate or take things in at school and this absolutely resonates with my ADHD. 

Fair enough. I’d still like to get a diagnosis one way or the other though. 

Just now, HollyWhispersWildly said:

Are you saying that my daughters diabetes could’ve been caused by my wheat intolerance? Well that’s certainly something to think about and quite scary!!! And to top it off, today she has told me she doesn’t know why but is unable to concentrate or take things in at school and this absolutely resonates with my ADHD. 

[Scott Adams]

What you said about care home makes total sense, and here in the USA finding care for the elderly that includes 100% gluten-free meals is difficult at best.  Let us know how it turns out. Here are our articles on Type 1 diabetes and celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/diabetes-and-celiac-disease/ 

[dkayethorn]

Hello, I have ciliac disease,  and my doctor had me to do stool samples to see if I had it. It came back positive for celiac. I then went and had upper and lower GI done the lower GI did not pick up the Celiac by looking at my small intestine but I am positive with celiac. You may want to have your doctor's do you have you do stool samples or they can send it off to a lab. I wish you luck this really sucks I know what you're going through.

[trents]

14 minutes ago, dkayethorn said:

Hello, I have ciliac disease,  and my doctor had me to do stool samples to see if I had it. It came back positive for celiac. I then went and had upper and lower GI done the lower GI did not pick up the Celiac by looking at my small intestine but I am positive with celiac. You may want to have your doctor's do you have you do stool samples or they can send it off to a lab. I wish you luck this really sucks I know what you're going through.

A lower GI does not examine the small intestine. That is done with an upper GI. The part of the small bowel affected by Celiac disease is just below the outlet of the stomach and that is part of an upper GI.

There is a stool sample test for celiac disease that has been developed by a certain individual but it is not widely recognized as a valid diagnostic method by the medical community at large. 

The first stage of diagnosis is normally a blood draw to check for the antibodies produced by the immune system trying to cope with gluten as an invader and a threat.

[dkayethorn]

1 hour ago, trents said:

A lower GI does not examine the small intestine. That is done with an upper GI. The part of the small bowel affected by Celiac disease is just below the outlet of the stomach and that is part of an upper GI.

There is a stool sample test for celiac disease that has been developed by a certain individual but it is not widely recognized as a valid diagnostic method by the medical community at large. 

The first stage of diagnosis is normally a blood draw to check for the antibodies produced by the immune system trying to cope with gluten as an invader and a threat.

I had an upper and lower gi completed. Thank you for breaking everything down. I had a blood test,  stool samples, and both showed up positive for ciliac.  I was trying to help this guy.

[dkayethorn]

My bad, I wrote lower instead of upper gi not showing ciliac.

[Jackie Garrett]

On 6/24/2021 at 11:13 AM, HollyWhispersWildly said:

Hello all. This is my first post. Apologies in advance if it’s long. 
 

I don’t even know what I’m asking - I just need to vent. Get it all out there and if anyone can cast any light on anything I say I’d appreciate it more than you’d ever know. 
 

Last year at age 42 I was diagnosed with ADHD. The main symptoms for me were brain fog, severe exhaustion, lack of motivation. I had been on Prozac for depression since I was 20, same kinds of symptoms. Never had to take another Prozac after I started the medication for ADHD; in my opinion it never was depression. At this stage I don’t think it’s ADHD either, I think it’s Celiacs, but I’ll explain. 
 

The medication for ADHD is basically amphetamine with something added to make it last all day. And it was life changing for me. It gave me the energy I never had before. For a while. Then I developed oral thrush, and it never went away despite a bucket load of Fluconazole, Nystatin, etc. This turned into Burning Mouth Syndrome. Permanent coating on tongue, extreme pain in mouth most of the time. The thrush has now gone but the pain in my mouth remains. 

Something happened to me those first few months on the ADHD meds. My lips would turn blue, I was covered in bruises, I couldn’t eat or sleep. I came off them for a while but the burning mouth remained. My iron levels, which had always been a problem, wouldn’t come back up at all despite being prescribed Ferrous Sulfate. The damage was done. 
 

Months of research and being passed from one uninterested doctor to another during a pandemic eventually led me to realise I had silent reflux and the burning in my mouth is pepsin. Probably caused by something I’m eating that my body doesn’t like. In desperation I paid for hair strand food sensitivity tests (not completely accurate, I know) which came back as highly sensitive to gluten, dairy and a few other bits and bobs. 
 

In April of this year I cut out gluten for nine days. I felt different. The diarrhoea that got me out of bed every morning my whole life went. The flatulence I had always struggled with disappeared overnight. I had a rough couple of days - headachey - and then after two days I just felt just more alive. My burning mouth didn’t go, but it eased. My friend who is celiac told me she thought I had it. I looked into it and it was uncanny, right down to the ADHD diagnosis. I’d spent most of my life tired, falling asleep at work, low on iron, just always feeling like I was being dragged down by some invisible force. I had thrush all the time, I was pale. However; I never had trouble conceiving, I’m a good height, weight etc. No tummy pain, often uncomfortable but nothing worth mentioning. 

I read that I needed to be eating gluten to get tested and after 9 days, I started eating it again. That was on 16th May this year and since then it’s like I’m falling to bits. By the end of the following day, I couldn’t string a sentence together. My reflux was so bad that my tongue bled. My joints ached, I very nearly had accidents if I left the house. It’s settled down but not completely. It’s much worse than it ever was. When I eat, the food just sits there and I feel nauseous all the time. I’m so lethargic I barely move. I have had to go off sick from work. I itch all over when I try and sleep.

I checked a 23&me report I got done last year and I have the DQ8 gene. Nobody in my family has been diagnosed with celiacs but my sister has IBS.  She’s 12 years younger than me and if she eats gluten, she gets more severe physical symptoms than me, pains and immediate diarrhoea but her doctor has never tested her for Celiac. She was also diagnosed with ADHD last year. My dad at age 70 has said he thinks he is autistic and it was overlooked. He and my brother both have digestion issues but they just take Lansoprazole and suffer. I don’t know the rest of my dads family, I never met them. But I know that between our kids, there is Autism, ADHD, asthma and type 1 diabetes. I think it’s the gluten, I really do. 
 

I just wondered if you agreed with me. Does it sound like Celiacs? My blood test which was done on 21st May (5 days after being back on gluten) came back negative, I have an endoscopy and colonoscopy booked for 8th July. I am scared in case it isn’t Celiac. 

What an ordeal you have been through, it’s not nice to go through and we just wonder what could be causing all these symptoms, I have been through various symptoms throughout my life life too, In my case it was Dairy, I have cut it out and all my symptoms have gone, sometimes if I have had something with Dairy in I will know, so maybe try it and see how you get on, lactose is hidden in a lot of things drinks as well and gravies and is not always listed, if you look up what food and drinks it is hidden in and avoid them and see how you feel, it’s just another avenue to try, I’m ok with gluten, but I know so many people are not, it worked for me. Good luck and I hope you get well.

[HollyWhispersWildly]

Thanks everyone. Apologies to @Wheatwackedfor not replying specifically to your post about ADHD. in true ADHD style, I read it and didn’t know where to start with a response and so didn’t but I want you to know I definitely read it and have given what you said some thought. I have contacted my daughters diabetes team and asked the nutritionist to ring me to chat about the celiac and ADHD links. We have so much more information than even when I was her age 30 years ago, and if I can avoid her going through what I did, I want to do that for her. I’m a bit overwhelmed at the minute with it all. I am persevering with the colonoscopy and transnasal next week because I think having an actual diagnosis will be useful, but I also appreciate the information you guys have given me if it isn’t celiac but NCGS. I didn’t appreciate the seriousness of it. I guess if it’s given me a lifetime of exhaustion, and I totally believe it led to me having ADHD too, it’s not to be underestimated. I’m going to cut out gluten to start, and most dairy but being British I need a proper cup of tea in a morning. I will probably also cut out hard to digest food such as beef and pork until I know what’s going on and feel a bit better. 
 

Thank you to you all. 

[trents]

5 hours ago, HollyWhispersWildly said:

Thanks everyone. Apologies to @Wheatwackedfor not replying specifically to your post about ADHD. in true ADHD style, I read it and didn’t know where to start with a response and so didn’t but I want you to know I definitely read it and have given what you said some thought. I have contacted my daughters diabetes team and asked the nutritionist to ring me to chat about the celiac and ADHD links. We have so much more information than even when I was her age 30 years ago, and if I can avoid her going through what I did, I want to do that for her. I’m a bit overwhelmed at the minute with it all. I am persevering with the colonoscopy and transnasal next week because I think having an actual diagnosis will be useful, but I also appreciate the information you guys have given me if it isn’t celiac but NCGS. I didn’t appreciate the seriousness of it. I guess if it’s given me a lifetime of exhaustion, and I totally believe it led to me having ADHD too, it’s not to be underestimated. I’m going to cut out gluten to start, and most dairy but being British I need a proper cup of tea in a morning. I will probably also cut out hard to digest food such as beef and pork until I know what’s going on and feel a bit better. 
 

Thank you to you all. 

There is concern that biopsy may not be as effective using the transnasal endoscopy method: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3930889/

I hope you don't mean you aren't starting gluten free eating before the biopsy.

[Scott Adams]

Yes, be sure to keep eating gluten daily until all celiac disease testing is completed, otherwise you may end up with false-negative results.

[maseymn]

Holly, I figure I went at least 28 years with active celiac before I was diagnosed. Had abdominal pain all the time, tired all the time. I was diagnosed and treated for depression, then thyroid, then sleep apnea, then anemia. It was the anemia that made my doctor test me for celiac (I couldn't absorb even prescription iron). She wanted me to have a biopsy to confirm (I did have multiple types of celiac antibodies in my blood) but I refused because I would have had to wait about 2-3 months. She said "What would you do if the biopsy indicated you did NOT have celiac, but you felt better on a gluten free diet?" I said "I'd never eat gluten again as long as I lived". She set me up with the nutritionist that day and I've never looked back. I've had doctors since try to get me to do a gluten challenge and have the biopsy, but I've told them I'm just not that curious. I know it's celiac -- my body was a mess due to not being able to absorb any vitamins etc. for years. I'm no longer anemic, my bones have gotten better, and I feel much, much better. I've been gluten free for about 14 years and I'll be gluten free until I die. There's nothing edible in the world that's worth how AWFUL I felt for over 20 years of my life. I wish you well, but if you feel better on a gluten-free diet, listen to your body. I wish you well.