Some Help, Please

[Sevenoclk]

I have had IBS since the birth of my youngest child 4.5 years ago. I have a history of ulcers and some other weird stuff, but IBS became a real issue after her birth. I am 35 years old. I have gone through the same struggles as many of you in dealing with the "IBS Diagnosis". Doctors are no help. They have suggested meditation, less stress and fiber. Ugh. I had a colonoscopy about 3.5 years ago and a celiac blood test. Negative.

I take probiotics daily, as well as magnesium -- and have for years.

Symptoms of IBS: Alternating C and D, bloating, depression, fatigue, fogginess, irritability, cramping. My IBS has never caused nausea or headaches.

I do not think I have celiac, but I suspect a gluten intolerance issue. I am very lactose intolerance, also. I just sent off a sample to enterolab for casein and gluten testing and hope to hear from them in 2-3 weeks.

So, about 10 days ago I went gluten free. I have been careful with what I eat. I take lactaid and the lactose probiotic, as well. I felt great last week and went out Saturday night. I had several drinks (wine and martinis) and some food. I did the best I could, but may have ingested some gluten. I drank too much and I threw up all day the next day and could not get out of bed. Splitting headache, fatigue, could not eat, etc. The weird part was that my tongue really hurt and I was so dizzy I could not stand up. This has never happened to me in all my years. I am still not feeling well and it's been about 4 days since that happened. I thought it was a hangover at first, but realized after an hour or two that it was something else. I still have a headache and upset stomach. It really scared me b/c I was out of my mind and unable to think straight or stand up. I drank Gatorade to hydrate, but continued to throw up anything I put in my mouth.

My question is this: Why would I react that way? Why am I experiencing these symptoms now when I've never had them before? Could it be that my body is having a delayed reaction to "coming off gluten"? Am I on the wrong track here with the gluten thing? I felt great last week and then from Saturday night on I have felt awful. I can't imagine that, if I were glutened, it would affect me like that if I had just been off gluten for a few days prior? I will say that my bloating has almost gone away. That is great b/c I hate the huge bloating.

Any thoughts? I am frustrated and confused and don't want to continue going gluten free if it is not needed.

Please help!

Thanks!

[ravenwoodglass]

Where did you go out to eat? Were you very specific in what you ordered? It isn't just the food but also prep that we have to be careful of. If something was grilled it needs a clean pan and you have to tell them no seasoning unless the restaurant has a gluten free menu.

Myself the martini would have done me in. I don't tolerate distilled gluten grains and for me vodka that isn't potato vodka is a killer. That may not be the case for you but until you are fully healed drink it with caution.

You do sound like you were glutened and yes even after only a short time gluten free we can find our reactions to be much more severe.

[Sevenoclk]

Where did you go out to eat? Were you very specific in what you ordered? It isn't just the food but also prep that we have to be careful of. If something was grilled it needs a clean pan and you have to tell them no seasoning unless the restaurant has a gluten free menu.

Myself the martini would have done me in. I don't tolerate distilled gluten grains and for me vodka that isn't potato vodka is a killer. That may not be the case for you but until you are fully healed drink it with caution.

You do sound like you were glutened and yes even after only a short time gluten free we can find our reactions to be much more severe.

Thank you for your response. I am really shocked to still be dizzy and lightheaded. My husband says he thinks I was drugged because I have little memory of the night and have been so sick since. I must admit, the painful tongue is one of the strangest things that has ever happened to me. The back of my tongue felt burned.

Thanks.

[ravenwoodglass]

Thank you for your response. I am really shocked to still be dizzy and lightheaded. My husband says he thinks I was drugged because I have little memory of the night and have been so sick since. I must admit, the painful tongue is one of the strangest things that has ever happened to me. The back of my tongue felt burned.

Thanks.

This may not pertain to you but the 'blackout' effect is exactly what I experience with vodka even with just one drink. I can drink potato vodka all night long, remember what happened and not even have a hangover. If and when you feel brave you may want to get a small bottle of distilled grain vodka and do a challenge with it. You may find that you are sensitive to it.

[Sevenoclk]

This may not pertain to you but the 'blackout' effect is exactly what I experience with vodka even with just one drink. I can drink potato vodka all night long, remember what happened and not even have a hangover. If and when you feel brave you may want to get a small bottle of distilled grain vodka and do a challenge with it. You may find that you are sensitive to it.

That is interesting. I will have to try potato vodka when I get up the nerve to drink a martini again!

I have a question: Is it possible for a NCGI to have neurological symptoms or are those reserved, generally, for celiacs? I am just wondering whether gluten can cause leaky gut in a NCGI as well as a celiac? So many of my problems are neurological (fatigue, dizziness, brain fog, depression).

Thank you.

[GFinDC]

I think the answer to your question is yes, NCGI people can have a wide variety of symptoms, including nuerolgical symptoms. If you are eating out, it is best to check if the place has a gluten free menu before going. There is also the possibility of food poisoning, which your symptoms also sound like to me.

[gf-soph]

I have a question: Is it possible for a NCGI to have neurological symptoms or are those reserved, generally, for celiacs? I am just wondering whether gluten can cause leaky gut in a NCGI as well as a celiac? So many of my problems are neurological (fatigue, dizziness, brain fog, depression).

Thank you.

My experience as a NCGI is that gluten can cause us all of the same problems as people with diagnosed celiac. The only potential difference is that a 'gold standard' diagnosed celiac has villous atrophy found on biopsy. It may be that I had villous atrophy but they didn't find it using the 4 samples they took, as damage can be patchy. It may be that I was in the early stages, and if I kept eating gluten they would have eventually found it. Or it may be that I never developed it, who knows. I do know that gluten makes me severely ill, and 2 years gluten free I am still managing the after effects on my body.

If you look into it there is research showing that gluten can act directly on the brain, not just the gut. There is an interesting article by Marios Hadjivassiliou called Gluten sensitivity: from gut to brain (published in Lancet Neurology). It looks at a group of patients with gluten sensitivity without gastrointestinal symptoms(they had IGA antibodies but a negative biopsy), and finds high levels of a range of neurological condition, from ataxia to epilepsy.

"Gluten sensitivity is a systemic autoimmune disease with diverse manifestations. This disorder is characterised by abnormal immunological responsiveness to ingested gluten in genetically susceptible individuals. Coeliac disease, or gluten-sensitive enteropathy, is only one aspect of a range of possible manifestations of gluten sensitivity. Although neurological manifestations in patients with established coeliac disease have been reported since 1966, it was not until 30 years later that, in some individuals, gluten sensitivity was shown to manifest solely with neurological dysfunction."

Obviously while they reported on people with positive antibodies you can get false negatives on blood tests.

Anyway, I thought that article was interesting. I know that I have depression directly caused by gluten, it persisted about 3 months after going gluten free and then I woke up one day and it was gone. I get foot cramps, mouth ulcers and depression when I am glutened, and ataxia at times so I know it affects my whole body.

[ravenwoodglass]

That is interesting. I will have to try potato vodka when I get up the nerve to drink a martini again!

I have a question: Is it possible for a NCGI to have neurological symptoms or are those reserved, generally, for celiacs? I am just wondering whether gluten can cause leaky gut in a NCGI as well as a celiac? So many of my problems are neurological (fatigue, dizziness, brain fog, depression).

Thank you.

Yes it is possible for celiac problems to manifest as neuro issues. I just got done doing a short research paper on it. Some people don't even have the typical GI issues but the research I looked at still defined these folks as celiac. In one study they found the antibodies in the brain on autopsy with some patients. It can cause ataxia, depression, anxiety and dementia. One of the papers I found advised that folks that don't respond to the medications typically given for stuff like depression and anxiety be screened for celiac. They did find that quite of few of the celiacs did go on to develop GI symptoms eventually but not all. For some the neuro effects were the primary problems. This didn't surprise me as for almost 26 years DH and neuro issues were my primary presentation with gut symptoms not showing up until I had my first child at around age 30.

[Sevenoclk]

Yes it is possible for celiac problems to manifest as neuro issues. I just got done doing a short research paper on it. Some people don't even have the typical GI issues but the research I looked at still defined these folks as celiac. In one study they found the antibodies in the brain on autopsy with some patients. It can cause ataxia, depression, anxiety and dementia. One of the papers I found advised that folks that don't respond to the medications typically given for stuff like depression and anxiety be screened for celiac. They did find that quite of few of the celiacs did go on to develop GI symptoms eventually but not all. For some the neuro effects were the primary problems. This didn't surprise me as for almost 26 years DH and neuro issues were my primary presentation with gut symptoms not showing up until I had my first child at around age 30.

Thank you everyone! That was terribly helpful information from each of you. Yesterday afternoon I began to fell better -- more energy, more upbeat. I am going to take the gluten enzymes with each meal for awhile b/c I figure any sort of enzyme will atleast help whatever food I eat digest better. I must say that my stomach is so flat that I can not believe it. I can definitely verify that gluten free has caused less stomach cramping and bloating. Large improvement there, atleast.

Thanks!

[chasbari]

back before I ever suspected celiac I would experience very painful swelling and splitting of the sides of my tongue if I ever drank beer or alcohol. It would happen faster each time I experienced it.

[Sevenoclk]

back before I ever suspected celiac I would experience very painful swelling and splitting of the sides of my tongue if I ever drank beer or alcohol. It would happen faster each time I experienced it.

Chasbari,

That is very interesting. Do you still have the issues with your tongue? I felt like mine was a little swollen and the back/sides were sore.

Do you get these now when you drink grain alcohols? More info, please!

Thanks!

[chasbari]

I very rarely drink anymore. I tried wine but the last time I had that was what set in motion my initial diagnosis of rheumatoid arthritis (I was thinking gout.) That was before my DX for celiac several years later. Seeing as I had nothing but bad experiences with it I just pretty much gave up on alcohol in any form. The swelling and cracking of my tongue was extremely painful, though.

[ravenwoodglass]

I must say that my stomach is so flat that I can not believe it. I can definitely verify that gluten free has caused less stomach cramping and bloating. Large improvement there, atleast.

Thanks!

Sure is nice to be able to zip those jeans. I loved having an excuse to buy new clothes. I had to wear a 14/16 to accomodate my belly before I was diagnosed. I'm now the same size I was in high school....at age 54.