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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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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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