Is It Possible To Have More Mood Symptoms?

[Anise]

Hi all,

I'm trying to find out exactly what the diagnosis REALLY is-- Enterolab was positive, bloodwork was negative, and the endoscopy would be $2300, not one CENT of which would be covered by my awful insurance.

The thing is that I'm starting to think that gluten causes *mood* symptoms for me rather than digestive/GI. I've been on and off gluten-free diets, and gluten doesn't necessarily cause any GI symptoms at all. But I honestly think it's connected to mood and concentration/ADD-type issues. Is is even possible to be gluten-intolerant and to have those symptoms *without* the GI problems???

[Mtndog]

In my opinion, if Enterolab was positive and I had to pay that much money for a biopsy, I'd go gluten-free. My bloodwork was borderline positive, I regret my endoscopy (I can elaborate later if you want but it was negative) and gluten DEFINITELY causes mood symptoms in me and MANY of us on the board. In some cases, people have no GI symptoms at all and have skin symptoms (DH) or neuro symptoms.

Welcome to the board! You'll get a LOT of good info here. I went gluten-free despite questionable bloodwork and a negative biopsy (I was later confirmed through gene testing and a positive diet response). I have NO regrets at all. I a'm not perfectly healthy by any means, but I'm MUCH healthier and much less depressed and anxious than I was 18 months ago.

[Anise]

  Mtndog said:

In my opinion, if Enterolab was positive and I had to pay that much money for a biopsy, I'd go gluten-free. My bloodwork was borderline positive, I regret my endoscopy (I can elaborate later if you want but it was negative) and gluten DEFINITELY causes mood symptoms in me and MANY of us on the board. In some cases, people have no GI symptoms at all and have skin symptoms (DH) or neuro symptoms.

Welcome to the board! You'll get a LOT of good info here. I went gluten-free despite questionable bloodwork and a negative biopsy (I was later confirmed through gene testing and a positive diet response). I have NO regrets at all. I a'm not perfectly healthy by any means, but I'm MUCH healthier and much less depressed and anxious than I was 18 months ago.

Thanks so much for your reply...

Um... what DID happen with the endoscopy you had? I'd really like to know... whatever details you feel comfortable sharing...

[Mtndog]

Anise- I said it that way because last night I was too tired to elaborate. I'd be happy to share with you. Basically, when my blood work came back "borderline" I decided to go gluten-free (didn't know you had to be ON gluten for the endoscopy). So by the time I got to GI #2 who decided to do the biopsy, I had to do a gluten challenge after being gluten free for two months. I was supposed to eat gluten for 14 days and I only made it through 10 because I felt so sick.

The GI had told me at the appointment that with borderline bloodwork and a positive response to the diet, that the endoscopy was "academic" and probably wouldn't show any damage but that he would consider me as having celiac's and I should still stay off gluten if I felt better. He was very nice at that point.

Go in for biopsy and I don't react well to sedatives/narcotics. Aafter being sick for 10 days I wake up from the biopsy and he looks at me and tells me I don't have Celiac's. I asked him why I had been so sick for the last ten days while eating gluten and he says, "Mind over matter." I was so upset.

The, a few days later I wound up in the ER because I was so constipated from eating gluten that I felt like I was going to die. I saw same GI for a follow-up and it turned out that he had only taken one biopsy. You are supposed to take biopsies from multiple sites as the damage from gluten can be scattered. He tells me I have IBS and sends me on my way.

I was very upset by the whole experience.

[Pilgrim South]

  Anise said:

Hi all,

I'm trying to find out exactly what the diagnosis REALLY is-- Enterolab was positive, bloodwork was negative, and the endoscopy would be $2300, not one CENT of which would be covered by my awful insurance.

The thing is that I'm starting to think that gluten causes *mood* symptoms for me rather than digestive/GI. I've been on and off gluten-free diets, and gluten doesn't necessarily cause any GI symptoms at all. But I honestly think it's connected to mood and concentration/ADD-type issues. Is is even possible to be gluten-intolerant and to have those symptoms *without* the GI problems???

Hi,

Celiac is VERY difficult to diagnose. The gold standard at one time was how you did on a gluten free diet. Now Dr's run all sorts of tests that may or may not be accurate and sometimes we are left with bigger problems than if we had just gone gluten free and seen if we felt better. Our son is 18 and when we first began seeing reactions to him eating gluten his neck began jerking from muscles and nerves in his stomach. His attitude was like ADD and hyperactive, big time. It didn't take long to put 2 and 2 together and take him off gluten, since I am celiac. His attitude changed back to our nice young man and his neck jerking ceased. When he does get into gluten now, and its pretty tough for now for an 18 year old, his eyes blink and blink, and neck will jerk, BUT, the biggest issue is that he becomes a monster, grouchy and mean.... He is in the process of learning that you can't pluck the piece of meat or pineapple off the gluten pizza at the school gathering and have it be ok. Enterolab is great...I would stick with eating gluten free and joy in feeling better!

[eleep]

My mood, anxiety and ADD-type symptoms were much more obvious to me than the GI symptoms -- now that I've been on the diet for a while, I'm a lot more aware of the GI stuff now -- which is useful because it can warn me to steel myself for the mood-related stuff that will follow!

[Guest cassidy]

My question to you is, do you feel better on a gluten-free diet? Right now it may seem important to get an official diagnosis, but if you try the diet and you get better then that might end up being enough for you, especially if cost is a factor. My blood work was negative and I am certainly much better on the diet. I have no doubt that I have a problem with gluten even if the test was negative.

I would get anxiety very badly. I was taking xanax and it made me feel better. After going gluten-free I only need the xanax when I'm glutened, so I'm positive the anxiety is due to celiac.

My mom didn't realize she had an gi symptoms until later. She would go to the bathroom several times in the morning but never the running after eating type of problem. It was always like that for her so she didn't even realize it was a problem even after she found out about celiac. So, if you have any stomach aches or other issues, you might not realize they are connected.

[Anise]

I really appreciate all the responses... I do think I improve on a gluten-free diet, but the thing is that I also have to avoid the OTHER things I'm sensitive to or just going gluten-free doesn't help at all. I'm hoping that maybe after being gluten free for a while I can start re-introducing the other things... I've read that lactose intolerance can be caused by gluten sensitivity and is not necessarily a true intolerance, for instance. Also, my acupuncturist gave me the TCM diet and that REALLY seems to help... (avoiding yin foods like sugar, cold foods, tropical fruit, etc...)

I just feel like I would be so incredibly relieved to get a firm diagnosis, but it sounds like I may never get one ANYWAY. If an endoscopy was covered by insurance, I wouldn't hesitate, but $2300... (faints again!) My diet has already been so restricted for so long that I honestly don't care a whole lot about also cutting out gluten, if I think it could mean bringing back some of the other stuff later.

[Looking for answers]

Hi!

I was much like you a few years ago--I was emotional, had severe anxiety and was irritable all the time. Furthermore, I had trouble concentrating, was tired all the time, and felt like I was in a cloudy daze. I happen to stumble across a book called the Diet Cure, and it was the first piece of literature I read that helped me make sense of the connection between food and feeling balanced. Since then I've eliminated all processed foods, anything containing gluten, caffeine, and I try to eat organic as much as possible. Oh, and I really try to eliminate the use of sugar, which really exaggerates the symptoms for me--especially the moodiness and hazy thinking.

If you can, try reading the book, as I think it will also help you greatly. In the meantime, good luck . . . it will all pay off eventually, I promise!

[Mtndog]

  Anise said:

I really appreciate all the responses... I do think I improve on a gluten-free diet, but the thing is that I also have to avoid the OTHER things I'm sensitive to or just going gluten-free doesn't help at all. I'm hoping that maybe after being gluten free for a while I can start re-introducing the other things... I've read that lactose intolerance can be caused by gluten sensitivity and is not necessarily a true intolerance, for instance. Also, my acupuncturist gave me the TCM diet and that REALLY seems to help... (avoiding yin foods like sugar, cold foods, tropical fruit, etc...)

I just feel like I would be so incredibly relieved to get a firm diagnosis, but it sounds like I may never get one ANYWAY. If an endoscopy was covered by insurance, I wouldn't hesitate, but $2300... (faints again!) My diet has already been so restricted for so long that I honestly don't care a whole lot about also cutting out gluten, if I think it could mean bringing back some of the other stuff later.

I was EXTREMELY lactose intolerant before I went gluten-free. I am HAPPY to report I can now tolerate lactose in moderate amounts.

But somehow in all this I realized I am legume intolerant (peanuts, soy and most beans). Don't really care much about that but I REALLY miss Reese's penaut butter cups Maybe some day.

[tracey*]

In the many many years before going gluten-free, I suffered from agoraphobia and other anxiety related issues. I'm about 6 months gluten free now and I haven't had any attacks (apart from when I was glutened)

I didn't have any celiac tests, apart from eliminating wheat and yeast and maintaining my lactose free lifestyle too. I can't afford the $$$$ either.

[hineini]

I take Enterolab with a grain of salt, honestly, but I was positive on that and negative on my blood test and the only thing I know for sure is how sick I get immediately after eating gluten. (Too sick to even go on a gluten challenge in order to get a biopsy).

My symptoms are mostly physical, however, I get MAJOR ANXIETY when I eat gluten. Usually right afterwards. I also have been less depressed since I went gluten-free.

[Anise]

  hineini said:

I take Enterolab with a grain of salt, honestly, but I was positive on that and negative on my blood test and the only thing I know for sure is how sick I get immediately after eating gluten. (Too sick to even go on a gluten challenge in order to get a biopsy).

My symptoms are mostly physical, however, I get MAJOR ANXIETY when I eat gluten. Usually right afterwards. I also have been less depressed since I went gluten-free.

Yeah, I don't know for sure exactly what's really going on... but I've been reading some very good books, and one, "Going Against the Grain" (Melissa Smith) says that NOBODY should really be eating gluten. Human beings have only been eating it for the past 10,000 years. We really didn't evolve to digest it. (Or if someone doesn't believe in evolution, Adam and Eve didn't eat it in the garden, you know. So it's possible to have sensitivity to it without anything showing up on a test (according to her theories, anyway.) I'm thinking about doing a very strict diet for a month, and then re-introducing things. At the absolute least, it can't hurt!