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As I read through the posts in this section. I can see the same frustration I have about being un-diagnosised. It is hard to not be able to take action when you have no starting place!

Today happens to be a good day for me, so far. This can change and usually does around 1:00(pm)-ish.

When people talk about "fatigue" it can mean various things and can present itself in different forms. My fatigue is the worst symptom I have. Second runner up is the mental confusion that goes along with it.

When my fatigue hits, it is as if i am stopped in my tracks, down for the count, completely wipped out. I am only 37 and when the tired hits me then I am unable to do much of anything at all. It lasts from about 1:00pm to 9:00pm. I do not always sleep when it hits me either. I have to lay down though.

I quit my job two years ago thinking it was job stress but it has gotten worse not better. During these times I seem to lose my ability to focus and make sense of things. I can not follow a conversation or understand what I am reading. I get very forgetful and even lose track of time. My whole body, soul and mind feels sooooo tired. It is hard to stand up straight.

I have had a friend mention gluten intolerance to me. I have always had digestive problems and have learned to live with them. The stomache cramps, eating bland foods, gas, bloating, running to the bathroom ect... I am highly tolerant to pain often unaware of my stomache pains and grumblings.

Doctors have been less then helpful. Sometimes mean. Sometimes my fatigue will be worse the other times. So some days the whole day is wasted because I am too tired to function. I am so timid about talking to doctors and I mis trust them so but I seem to have no option but to put my faith in them. I can not go on like this much longer. I feel so old and achey. I am missing out on so much in life and my son is missing out on the mom I used to be.

I want to know how many people experienced this same type of unrelelenting fatigue with the mental confusion? IS this common or not with gluten intolerance?

Thanks

ToriT

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Celiac.com Sponsor (A8):

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You sound celiac to me--espeically with the bloating, stomach pains, etc. Extreme fatigue is also associated with celiac. I don't experience it, but I think you'll get many replies from people who do.

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It does sound very much like celiac. I would find a doctor near you who is knowledgable about it and then get tested.

Fatigue can come with celiac. I had fatigue but not to the point that you are describing. After going gluten-free my symptoms either went away or are over 10 times better.

I had to switch doctors a few times till I found a reg doc and a GI doc that actually were knowledgable in celiac and able to figure it out. I definately understand your frustration with doctors. I hope you get feeling better and if you need any help just let me know :D

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Chronic fatigue, fibromyalgia tender points, memory issues, stomach pains...I had them all to the point that I was disabled before anyone considered celiac.

If your doctor won't at least do the blood work to see if it might be a problem, find one who will. It is worth the fight...much better than being labeled stressed and depressed for the rest of your life.

By the way, I use B-complex, folic acid, and B-12 to help with the fatigue and thinking problems. My endocrinologist has me using them in an insulin needle twice a week with xylocaine added to help ease the shot. It is not too bad and it makes me feel so much better and have so much more energy that it is worth it.

Nothing did more good than going gluten free. It took a while, but the effort is well worth the trouble. Don't do this before they finish testing you or your results could be effected and come up as a false negative or inconclusive.

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THANK YOU, THANK YOU... :rolleyes:

This is a very hard journey. I am feeling awful at the moment and getting the hand tremors do you all get that too? I wonder why people present with differing signs and symptoms?

This is one disease that seems possible in my case. I do need to find the correct doctor. Are these tests for celiac disease often misread by doctors that are not familar with it?

Thank you all again!!!!

ToriT

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Many people have different signs and symptoms and some no symptoms at all that is why celiac is so underdiagnosed.

Not all doctors have a very good knowledge about celiac. They don't know what to look for. That's why finding one who knows about celiac is very important.

I'm not sure where you live but if you go to the homepage on this site they have a link of recommended doctors and you can look for those in your state. If you live in MD I have 2 wonderful suggestions. Good luck and God bless :D

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I have fatigue like that but only when I eat yeast products...knocks me out cold within an hour. The effects diminsh after a time but linger for days and can include a fever, fuzzy thinking, lethargy, etc. None of my other intolerances (corn, gluten, lactose/casein, soy, peanuts, almonds, garbonzo, or MSG) "hit " me like this.

-Kate

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I get the hand shakes, but even worse is that over time the hands began to clamp shut to the point that my nails would cut into the skin. The mag sulfate shots help that almost immediately. The neuro symptoms do get better over time. You are right...a problem with yeast will set them all back into motion.

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I finally have an appointment to get my digestive system checked out :). I hope I find some answers. I do not know if i can handle hearing "everything is fine". There has to be an answer and solution for these ill feeings.

My friend has many physical problems and has FIBO, positive for lupus anti bodies, bones of an eighty year old ect.... Her hands clamp up too. I think she needs to explore celiac disease as she is similar to myself. She gets frozen actually. If I recall correctly she said they look like the fetal position (claw like and close to the body) - similar to when someone gets into a serious accident and suffers from being paralized. She went to the emergency room both times it happened to her which was nothing short of a fiasco. No answers ever. Showed low potassium is all, i think.

IS this what your hands do? I just get the tremors similar to what elderly people experience. Since I quit work I have not had the hand tremors. My job was very physical. I think when I push myself physically my body responds by tremors and tics (forgot about the tics!). Tics on my left eyelid.

Praying for answers....

Be well all :)

ToriT

PS Just read this quote by Laura Hillendrand that describes fatigue in a new way a:

(she is talking about chronic fatigue syndrome) "This illness is to fatigue what a nuclear bomb is to a match - it's an absurd mischaracterization."

This is how I feel about my fatigue. There is no word in the english language to describe what I feel when i say i am tired.

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Yes, that is exactly what my hands do. When it gets really bad, I am curled up in almost a fetal position as well. Both hands, arms, and feet curl tightly. Massage helps if it is done slowly and deeply. The mag sulfate shots work wonders with it. The gabitril is good also. When this occurs in its worst state, my face drags and I look as though I have had a stroke. Once I had been gluten-free for a while, this occurred less and less often in its extreme form.

Overexertion will trigger the tremors and the tightened muscles. I have what my family lovingly calls a "refrigerator nod" because the first time they realized I was doing it, I happened to be nodding toward the refrigerator and they thought I wanted something and was just asking in an odd way. My head tics back and forth. Now they know to look for it as a sign that I need to get in the bed and rest.

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I describe the fatigue this way:

Think of how you would feel if you had just worked on a project for three days straight with no sleep then you sat down in a recliner to rest for a few minutes. Just as you drifted off to sleep, a buzzer went off to tell you of some new emergency that you just have to handle right now. That feeling of trying to drag yourself out of the chair just to do what has to be done might come close to what I mean when I say "I'm tired" on a normal day.

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The unrelenting fatigue and mental fog were the worst part for me. People used to think I was retarded it would get so bad. I was labeled as such in school and was put into special education classes when I was younger when all I really needed to do was quit eating gluten. Since going gluten free most people can't keep up with me now.

Ian

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Ahhh Ian,

I was a special education teacher in public school. I know the system and how cruel it can be. The school system is harsh towards any one not in the "norm". The other students are not so cruel as the media seems to protray. The system does seem to place blame on the student with special needs and their parents. I am sorry you had to indure that when simple dietary changes were all that was needed! What a shame.

I wonder how many students that have a true medical problem are put into sped classes. especially kids with ADHD and other behavioral problems are put on harmful medications that effect their personality and minds.

The autistic research is very interesting in relation to gluten, msg, and "fake" sugar intolerances.

It seems as if many autoimmune people benefit from a gluten free diet.

It is sad but I am glad that you are better now.

ToriT

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PS i have made an appointment with digestive doctor. I have been waiting months. End of march I see him!

But I have somewhat reduced gluten. I know I have to keep eating gluten to test correctly but it is hard to eat it when I think it may be the cause of my problems. Feels like i am putting poisen in my body if this is in fact the cause of my symptoms.

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Ditto, ditto and ditto!

I basically felt totally intoxicated all day, but without the warm and fuzzy feeling. I had a pulsating headache right in the front of my head. I had tics and tremors constantly. I would nearly pass out when I got up in the morning from the dizziness and when I walked a just stumbled around tripping over my own feet. I'm sure my neighbors thought I was drunk. I couldn't stand the sunlight or any heat at all - that made the pain and dizziness and weakness even worse. In fact, I don't just want to say I was fatigued, I was SOOOOOOOOO weak! My legs would tremble as I walked b/c I couldn't support my own weight (the little I had) and I couldn't keep my balance on stairs. I was so confused an foggy-headed all the time I had to write lists to remind myself to bathe and brush my teeth and stuff like that. I was good as dead. I couldn't trust myself to carry my baby any more, and when it got the worst, I was having blood-sugar crashes so bad I nearly went into coma. Heart-racing, night-sweats, everything. Eventually I ended up losing a few pounds every day until I was down to about 89lbs.

Originally, I only tested positive for 1 of 3 antibodies and my doctor wasn't convinced I had celiac disease. Then I had my endoscopy and it came back NORMAL! I had been on the gluten-free diet for a few weeks though (AND FELT GREAT!). After testing nomal in the endoscopy I went back to eating 'normal', and only had D for 1 day. I seemed to go into remission or something, cuz I ate normal for several months, but then all the symptoms came back. I got a new doctor and this time my blood work showed all the antibodies elevated. I went back on the gluten-free diet and I have felt wonderful for the whole year since! And my symptoms went away almost immediately.

All I can tell you is, get yourself tested, but no matter what your dx, try the diet afterwards and see what happens. This diet is good for other problems as well (MS for instance - which has very similar symptoms to these neurological sympt).

Be well,

-donna

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I wonder if the "epidemic" of ADHD would go away if kids were simply fed a better diet. My parents always tried to provide a good diet but it was grain based because, well the food pyramid said that's what you should eat. I am an ardent follower of the Atkins diet. Dr. Atkins was a very harsh critic of the grain based food pyramid and I firmly believe he was right.

I haven't been officially tested for celiac disease and probably never will. My experiences with doctors and this problem has really soured me on the medical profession. Most doctors it seems are pretty clueless about nutrition but love to write prescriptions. There is no doubt I have celiac disease because of the way I feel now versus the way I used to feel.

Ian

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Nothing to add in terms of fatigue, but welcome, Ian. If you didn't get tested by a doctor, what alerted you to the possibility of celiac? Most Americans don't even know what celiac is even though 1% of them have it :).

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I read the Atkins Diet book. There is a whole chapter on food intolerances and he described exactly what was wrong with me. Not one doctor I ever went to ever suggested a food allergy. This website provided me with a lot of good information also. Plus Dr Atkins was a very harsh critic of the grain based food pyramid. Dr Atkins felt that grain should only be eaten in very small amounts, and only whole grain. He felt that any processed grain was poison. After reading that I started the Atkins diet and it transformed my life. In my experience the Atkins diet is a good way to go for people who have celiac disease or gluten intolerant. May not work for everyone but did for me.

Ian

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