One Simple Question

[conniebky]

I know sometimes some people have neuro responses, but my question is: Is there anyone on this board who does NOT have ANY GI reactions, but other things, with NO GI reactions?

thanks!

[kaki-clam]

I bought some of the Amy's frozen dinners a few weeks ago at Walmart. She has the ones that are "gluten free" then the ones with "no gluten ingredients" since the "gluten free" ones say on the box that they are processed in a facility that contains wheat and I never had a reaction to them, I figured the "no gluten ingredients" would be ok to......WRONG...I didn't have any GI symptoms, but I am fairly certain I went stark raving mad for a few hours. I remember having this strange feeling of fogginess in my brain and all of the sudden I got very angry...I mean really angry for no reason. I wound up turning off all the lights and tv and laid on the couch for a few hours grinding my teeth and clenching my fists. After a while I was fine. I decided to see if it was the dinner that caused it, so I heated up another one a few days later and ate only a small part of it..less than half, and sure enough the feeling came on again...not even as close to as intense and it only lasted an hour or so....

Is that what you are talking about?

[conniebky]

Yes, that is exactly what I mean. I never have a GI reaction. We're still trying to figure me out! I get dizzy and panicky, but I've never had GI reaction, which makes me think it's not gluten.

Anyone else?

[Lisa]

Connie, the majority of people with Celiac Disease do NOT have GI issues. I will try to find a link to support that (but gotta go fix supper).

Often times, Celiac Disease is a secondary diagnoses to other things like diabetes, fibro, gluten ataxia, DH, just to name a few.

[SGWhiskers]

I had neuro only symptoms for years then in one horrible horrible weekend, the undiagnosed celiac took over my life. Vertigo, Migraine, confusion, sensory hyperstimulation, and pain all hit me in the first days. Then the GI symptoms started, but they were nothing big. With the exception of recognisable food in my stool, the GI symtoms went away for the next 4 years while the doctors tried to find a diagnosis I would beleive. Neuro symptoms were the only symptoms during that time unless I accidentally was gluten free for a few days. When I went on the gluten free diet, my neuro symptoms started resolving, but the GI problems started flaring.

So if you could discount one terrible weekend that, had I been running a fever, I would have mistaken for the flu, I was gi problem free until diagnosis. Neuro symptoms are still my primary problem if I get CC

[GlutenFreeManna]

I get both types of symptoms now, but the neuro symptoms were MUCH, MUCH, MUCH WORSE than the GI symptoms. In fact the majority of my time suffering undiagnosed (about three years) I had only neuro symptoms. The one GI symptom I had was mild D after eating, but I do not have a gall bladder and my doctor told me that was common in individuals with their gall bladder removed. My GI symptoms started to get worse (more D, gas, bloating, pain, etc) in the last few months before I tried the elimination diet out of desperation (I had gotten to the point where I was miserable no matter what I ate, so I figured might as well cut my diet down to the basics and try to sort out if it was a food intolerance). Had it not been for the really bad GI symptoms in the end of my time of illness I never would have suspected food let alone celiac, however I have no doubt that the neuro symptoms I had for years prior were caused by the gluten. I still get them really bad when I get glutened. My hands shake, I have muscle pain and spasms, joint pain, swollen hands and feet, weakness in my hands (can't even open a bottle of water), fever, brain fog, fatigue, anxiety, high emotionality (anything from crying at the drop of a hat to anger over little things), headaches, blurred vision (visual migraines?), I can sleep for 10+ hours and not feel rested, but I also doze off easily during the day, I get carsick, feel nausea, dizziness/light-headed (can't tell you how many pregnancy tests I took), etc. Now that I'm gluten free, if I accidentally eat gluten I get all of this PLUS bad GI issues.

Also I know you didn't ask about this, but I have no doubt that gluten caused me to have three miscarriages. I had irregular periods, heavy bleeding, and bad PMS before going gluten free. Now they are relatively light and regular. Bottom line is Gluten can cause many other symptoms besides GI symptoms. Some people have celiacs and have NO symptoms at all, but they found out they have it via blood test and biopsy. Don't let your doctors (or anyone else) put you in a box and say you CAN NOT have this if you don't have GI issues. If eating gluten free relieves your neuro symptoms, then that is what you need to do.

[adab8ca]

For me it is terrible small fiber peripheral neuropathy that sent me to a neuro that for some reason decided to check me for celiac and my ttg was off the charts. i am still awaiting biopsy and am truly in hell with this...no GI symptoms.

[lucia]

The medical community established celiac as a disease of the gut early on, so many doctors still see it that way. The GI doctor (& associate professor at a top medical school) who I saw had no idea that neurological symptoms could be connected with gastrointestinal symptoms. He was wrong.

Check out this recent article, "From gut to brain" in the Lancet:

Open Original Shared Link

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.

Connie - it is gluten! Maybe you could share this article with your doctor? I can send you the whole article if you want.

[glutenfr3309]

it varies for me, but now that my stomach has calmed down overall, it doesn't always bother me.

i have noticed the brain fog or major moodiness coming out of nowhere but i'm not sure if it's CC gluten or something ELSE that's causing it now.

[txplowgirl]

Connie, I am going to be blunt with you. STOP Eating Gluten! Seems to me you are in denial. Your doctors, if they are telling you that it can't be gluten that is causing this then they are also in denial because they haven't learned about any of this because they refuse to educate themselves. That is my personal opinion mind you. But you are doing yourself harm if you keep this up.

Get off the gluten, dairy and soy for at least 6 to 8 weeks. Soy and dairy by the way gives me anxiety attacks and depression. I bet you will finally start to feel a lot better. What have you got to lose?

Hope you get to feeling better.

[Skylark]

I was thinking the same thing. Didn't you about lose your mind last time you ate gluten, Connie? It sounded absolutely awful. I understand not wanting to go onto a difficult diet, but doesn't the dizziness and panic happen when you eat gluten?

Here's another article for you to look at with the neuro problems and celiac.

Open Original Shared Link

This abstract is pretty technical. Basically it says that they found people with ataxia and silent celiac disease - there were antibodies in the gut when they did a pretty expensive research test but no GI symptoms. You're not describing ataxia, but gluten can clearly affect other parts of the nervous system.

Open Original Shared Link

And here's another abstract that talks about people with celiac that have neuro symptoms only and not GI symptoms at first.

Open Original Shared Link

[kayo]

I had irregular periods, heavy bleeding, and bad PMS before going gluten free. Now they are relatively light and regular. Bottom line is Gluten can cause many other symptoms besides GI symptoms.

I really feel as though I have had gluten-intolerance much of my life. For 10+ years I had very heavy periods that would last 2 and sometimes 3 weeks. I had my period more than when I didn't! TMI alert > I passed clots the size of grapes. It was awful and painful. I would wear a super tampon and a giant pad and still bleed through. I had all kinds of tests and everything came back normal. Doc said, I guess this is just the way you are.

Fast forward to going gluten and soy free and now my periods are a breeze. 1 week, mild cramping for 1 day, no severe bleeding and NO pms. In fact, though I am regular, my period is often a surprise because I have no indication it's coming. No pre-period nausea, cramping, etc.

So for years there were signs something was wrong but no one, not even me, connected it to diet. The GI issues started 5 years later. And then it would be another 4 before gluten was suspected. Again, did not connect it to my periods until my periods changed for the better.

So you can see how gluten can have far reaching implications. Not just our guts and our brains but other systems too.

[conniebky]

I seriously asked this question because the GI issues, which I read so much about on this board, I don't have 'em.....which was leading me to believe it might not be gluten.

I just posted another post, the good the bad and the sister which incldues some other insights into the confusion that is me LOL

[K8ling]

I have GI issues, and I get absent minded. Gluten also affects my periods. Gluten can affect everything.

[rdunbar]

I only developed GI symptoms around 2 years ago, and this is after suffering for over 10 years with dermititas herpetiformis; I even found some old family photos where i have a rash on my face as a teenager, (i'm 43 now)

have pretty much suffered my whole life with mood disorders, massive anxiety and panic attacks which i now know are 100% gluten related. also ataxia, achy joints, proneness to skin infections, ect... i've had much longer than i ever had GI symptoms.

even though there is a lot of information out there about the science of how gluten effects the human body/mind, there is so much we don't know.

for instance, i heard that the antibodies may attack your gut, or they may attack your skin (DH), or your brain. If you have DH like me, the antibodies made your skin the front lines, and not your gut, they will get around to that later.

why do they have different preferences about what part of you they will attack?

who knows?

If you are experiencing mental distress, irritability, anxiety, as a direct result of ingesting gluten then your brain is under attack, there is no doubt about it. who cares if your gut isnt the target of the antibodies yet? don't touch gluten with a ten foot pole is my advice.