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Cant Sleep


joemoe003

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melzie Newbie

Hi my name is Melanie and after 16 months of being sick I finally got a diagnosis of celiac disease..I have I believe been Gluten free now since dec 04 yet I am still feeling just as poor as I did before..I now am unablt to sleep..I am up usually till about 3 am and then I am up early with my six year old..I have been told about Gluten withdrawls, but how true is that. I have a panic disorder and my Dr, who is suppose to be the specialist is unaware of medication I can take? I read here you can havd Ativan? She also gave me ambien, now is that gluten-free or not?

I am at a loss and would just love to calm my nerves and sleep so any help would be great..

Melanie

Gluten Free since Dec 04


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darlindeb25 Collaborator

hi melanie---i do know that paxil is gluten-free--i was taking it when i went gluten-free--that was 3 1/2 yrs ago--at the time i couldnt get the panic under control--i was taking 40 mg and they usually start you out at 5 mg---give it time--some of us do take longer to feel better--you have only been gluten-free now for close to 7 weeks, you may beone who needs longer-----i also found that i had to severely limit my soy intake--soy was keeping me awake at night and i was also suffering joint pain again--the soy issue with me started last summer, but you may want to try limiting it now and see what happens---no soy flour, no MSG, be very careful about tuna, when packed in water, it is usually vegetable broth made with soy and it makes me sick--hydrolized is usually soy--beleive me, its hard to stay away from soy too, but you may feel better---now, soy lecthin doesnt bother me :P i can still have that occasional candy bar i think i need :lol: --i just know that soy makes me sleepless and the joint pain gets unbearable-------also--are you making sure you arent getting any gluten--are you checking ingreds in your shampoo, bath soaps, and lotions--make-up too--you can get glutened from these products--in your eyes in the shower or mouth, on your hands and touching your food----so much to remember huh----keep at it--feel better--deb

cdford Contributor

I did not know that soy was part of the problem with sleeping. I react to it as well. Don't think I have gotten into anything lately, yet here I am at almost 3a.m. reading a message board. It is encouraging, though, to see how many others find themselves up at these rediculous hours. I saw back a few posts that someone was having trouble with cal-mag tablets. Me too. The doctor has me on mag sulfate injections. They seem to help. They are not an easy shot, but adding lidocaine to the injection and using an insulin needle limits the discomfort. It does help with the sleep, so I think I will go take one now. I had not even thought of it tonight.

judy05 Apprentice

After one and a half years of being gluten and dairy free I am

still unable to get a good night's sleep. After reading your postings

I am going to try to not eat soy for several days. Do you think

one week would be enough time? I only slept good one night

this week. I do have my elderly mother on my mind because

she is not good, caught the flu in the nursing home even though

she had a flu shot.

I'm amazed at how many foods contain soy, husband is shocked.

Does anyone know of any publications that can link soy with

sleeplessness?

Thanks for this discussion. I don't know what I would do without

this board...

darlindeb25 Collaborator
:) well all---i have finally come to a conclusion-------i moved to long island on christmas day ;) yes, christmas day--i decided it was time for me to get on with my life and i loaded the car and went--i have been here now for 1 month--my man is here, so that helps so very much, i found this really nice apartment in a house with a very good family in a nice neighborhood, after 4 days here i found a wonderful fulltime job, making more an hour starting then i did after 4 yrs on a job in michigan and no--the wages arent higher here, i just had an angel watching over me when i applied for this job---in mich i worked at a gas/convience store and was under so much stress--working alone is not my type of job, especially at a gas station--i live so close to the ocean---i am so relaxed here--i grew up in michigan, i have 5 children and 6 grand children and yes i miss them, but i can honestly say, mich was killing me------i am gluten-free, corn and soy limited--now, my headaches have stopped after coming here and finally--i am sleeping nights---stress everyone, even with our food intolerances under control most of the time--the stress of everday life is as bad as the intolerances--i love it here, i love my job and i love my man--my angels are watching over me and all is good in my world--not that i dont miss my family, i do, so very much--but this was the change i needed to get better and i thank god i was gutsy enough to move on with my life--sometimes it is so much more then the intolerances or i guess we need to add stress as an intolerance--the hardest one to overcome :lol::lol::lol: that's me :lol::lol::lol: deb
judy05 Apprentice

Hi Deb,

I sort of did the same thing as you. I moved back to my

hometown in Pa after living in Delaware for 30 years.

My kids and my friends are there but I was getting so

sick from the humid summers and living so close to

chicken farms on one end of the state and chemical

plants on the other. I wanted to come back to the

mountains to get healthy again, I suppose that was

selfish of me but my kids can come and visit, just like

I did when my parents were here. I'm glad I did because

I have been here for my mother, she is 94 and not well

so I'm glad I can be there for her.

Congradulations on your move, I hope all goes well for you.

If I ever did decide to move back I would want to be close

to the water, the salty air is very healing and rejuvenating.

darlindeb25 Collaborator
;) thank you judy----geez--i grew up on a chicken farm and michigan is very humid--i was asked once how i thought i could live on an island if i couldnt take the humid weather in michigan--but its different here and you are right--the ocean air is very healing and watching the ocean is so soothing--its so majestic and carefree--i walk away feeling comforted--i know i made the right decision and if it was a selfish decision, then it was high time i made a selfish decision for me--i raised my kids pretty much alone and my life was them and finally i have time for me---i never felt good in michigan and i had headaches everyday of my life--the headaches have quit here, i am sleeping nights again, i havent done that in years--i miss my kids and grandkids and the rest of my family and friends, but you are right--they can visit :lol: and what a place to visit--i am truly happy here, happier then i have ever been--it's all good----------deb

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      I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary. 
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      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
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      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
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