My story so far... would appreciate support and advice.

[keepswimming]

Hi everyone,

I've been reading posts on here for a little while, but I've now decided to join, to hopefully get some support and advice...

To give you some background, I have struggled with digestive problems/IBS for 13 years. Then 3 years ago I had Epstein-Barr virus, which led into Chronic Fatigue Syndrome/M.E. At the time I was diagnosed with M.E. I was tested for celiac, which came back negative (I was eating gluten at that time).

However I have heard of some people with M.E. who improve by cutting out certain foods, so I did an exclusion diet with a few different things. Everything else I reintroduced without a problem, but when it came to gluten (after about a month gluten free) I had a bad reaction. Upset stomach, bloated, stomach pain, headaches, nausea, exhaustion. 

So I went back to eating gluten free. However after that my stomach seemed extra sensitive (I'm thinking now the result of being glutened?) and I also seemed to have a similar reaction to some gluten free products. So, rather stupidly, after six weeks I decided I was going to eat gluten again, as clearly I wasn't feeling better on a gluten free diet... 

Big mistake. I wasn't too bad with just small amounts, but then I had a weekend when I ate a lot of bread and I got so sick... All the symptoms already mentioned but worse, also a feeling of being so ill, like having flu, and really bad upset stomach. So I've cut it out again, and from another experiment I've realised that eating corn/maize has a similar effect, which would explain why gluten free stuff was making me ill... I read that some people can experience cross reactivity and it certainly seems like it effects me in a similar way to gluten...

Since reintroducing gluten for the second time my stomach is even more sensitive. I last ate gluten a month ago, and corn 10 days ago. I'm just recovering from the corn, for the first week I felt horrible, I'm still feeling iffy but not so bad, but I'm having to eat a very limited, bland diet at the moment or it upsets my stomach. I'm just hoping after a while eating gluten and corn free things will settle down... and maybe it might even improve my overall health...

Thanks so much if you read this far... I don't have any specific questions but I'm just feeling quite alone right now so any support would help, and encouragement that things will get better as at the moment I'm feeling a bit miserable with how sensitive my stomach is... 

I mentioned I was tested for celiac three years ago and it was negative. I'm guessing that may mean I'm looking at NCGS, unless it has developed in the meantime.

[trents]

Welcome to the forum, keepswimmin!

First, it is normal to experience more severe reaction to gluten after being gluten free for a significant period of time. We lose whatever tolerance we may have had for it when we were consuming it regularly.

Second, do you have a record or do you know what tests were actually run when you were tested for celiac disease? Was a full celiac panel done or just tTG-IGA? Not everyone with celiac disease will throw a positive tTG-IGA. That is the value of a fuller panel which utilizes additional antibody tests. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Did you only have serum antibody testing done or did you also have an endoscopy/biopsy performed?

Have you been checked for SIBO? Your intolerance of corn makes me wonder about that in the sense of the issue really being high carb foods in general feeding an overgrowth of bacteria.

Have you checked all your meds and supplements for gluten. Wheat starch can be used as a filler in pills.

Do you still eat out in restaurants?

[trents]

Also, have you looked at oats (even gluten-free oats) and dairy as possible co-conspirators? Many celiacs cannot tolerate dairy and some react to oat protein (avenin) the same way as they do gluten. And have you looked into "meat glue" as an issue for some celiacs?

[keepswimming]

19 minutes ago, trents said:

Welcome to the forum, keepswimmin!

First, it is normal to experience more severe reaction to gluten after being gluten free for a significant period of time. We lose whatever tolerance we may have had for it when we were consuming it regularly.

Second, do you have a record or do you know what tests were actually run when you were tested for celiac disease? Was a full celiac panel done or just tTG-IGA? Not everyone with celiac disease will throw a positive tTG-IGA. That is the value of a fuller panel which utilizes additional antibody tests. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Did you only have serum antibody testing done or did you also have an endoscopy/biopsy performed?

Have you been checked for SIBO? Your intolerance of corn makes me wonder about that in the sense of the issue really being high carb foods in general feeding an overgrowth of bacteria.

Have you checked all your meds and supplements for gluten. Wheat starch can be used as a filler in pills.

Do you still eat out in restaurants?

Hi Trents, 

Thank you so much for all of this, I'm a totally newbie so I really appreciate your questions and the information. It makes me feel less alone! 

I don't have a record of the tests. It was a blood test on the NHS (I'm in the UK) so I would guess it was just for tTG-IGA... 

No I haven't been tested for SIBO so it sounds like that's something I ought to look into, thank you for the suggestion. I haven't contacted my doctor yet as I was unsure how much help they could give but that might be something to ask them about. I am fine eating rice and gluten free oats, would they likely also be a problem if it was SIBO? 

The only thing I take it a vitamin pill which is gluten free. I haven't attempted to eat out since going gluten free the second time, and I am being quite careful about buying gluten free products. 

[keepswimming]

1 minute ago, trents said:

Also, have you looked at oats (even gluten-free oats) and dairy as possible co-conspirators? Many celiacs cannot tolerate dairy and some react to oat protein (avenin) the same way as they do gluten. And have you looked into "meat glue" as an issue for some celiacs?

I excluded dairy and oats along with gluten, and had no problem when I reintroduced them so I think they are OK... I haven't looked into meat glue, I will research it thank you. 

[trents]

Have you had both an upper GI and a lower GI to check for other problems not necessarily related to gluten? Like Crohn's or ulcers?

You mention feeling all alone. Do you have support in other dimensions of life such as family, friends, church, work place? Have you investigated Gluten Sensitive/Celiac Disease support groups that may be in your area?

[keepswimming]

Just now, trents said:

Have you had both an upper GI and a lower GI to check for other problems not necessarily related to gluten? Like Crohn's or ulcers?

You mention feeling all alone. Do you have support in other dimensions of life such as family, friends, church, work place? Have you investigated Gluten Sensitive/Celiac Disease support groups that may be in your area?

I haven't had any kind of checks... I was diagnosed with IBS without any kind of investigation done. Then I had a bad flare up a few years ago and tried to get help, but had a really bad experience with a doctor who clearly thought it was all in my head! It sounds like I need to go to the doctors and push for some investigation to be done. 

Yes I do have a good support network of family and friends, which I'm thankful for! But I don't know many people who are gluten free so it's more from the aspect of needing advice and not knowing who to ask. I don't know about gluten free groups nearby, that's something else I could look into. Thank you so much for asking. 

[trents]

I would definitely ask for some more thorough GI workup. One of the mistakes I fear the gluten sensitive/celiac community makes too often is assuming every physical problem they experience is related to their gluten disorder. And have you had a CBC and CMP done lately? May I ask what age group you are in?

Edited July 27, 2022 by trents

[keepswimming]

2 minutes ago, trents said:

I would definitely ask for some more thorough GI workup. One of the mistakes I fear the gluten sensitive/celiac community makes too often is assuming every physical problem they experience is related to their gluten disorder. And have you had a CBC and CMP done lately? May I ask what age group you are in?

Yes I will do. I think I was hesitant to go because I thought they would just tell me to do a gluten challenge to retest for celiac, and I'm not sure I can cope with that at the moment! But it sounds like there may be other things they can check for. 

Before I was diagnosed with M.E. I had lots of blood tests done to rule anything else out, but nothing since then. My health isn't good, I put a lot of it down to the M.E., but I'm hoping that if gluten has been a problem cutting it out may help in the long run... I'm 30 next month. 

[trents]

As you probably know, autoimmune diseases tend to cluster. It is often the case that when you get one, eventually there are others that develop. All this is related to an immune system that is in some ways dysfunctional, hypervigilant. Have you been checked for Hashimoto's? 

Edited July 27, 2022 by trents

[keepswimming]

11 hours ago, trents said:

As you probably know, autoimmune diseases tend to cluster. It is often the case that when you get one, eventually there are others that develop. All this is related to an immune system that is in some ways dysfunctional, hypervigilant. Have you been checked for Hashimoto's? 

No I don't think I have. Another to add to the list!