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Itching And Twitching!


CR5442

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CR5442 Contributor

Many people have talked about itching and twitching on this site in the process of recovery. How long on average did you find it took for these symptoms to disappear? I don't itch all the time like I used to but now just in the middle and the end of my cycle (about 3 days in the middle and 7 - 10 days at the end). Out of interest has anyone here also suffered from Obstetric or normal cholestasis? I had this with both of my pregnancies and neither time did it stop after pregnancy. Only after being gluten free for 8 weeks or so did it start to diminish.


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AVR1962 Collaborator

There could be a few reasons for itching. Look up https://www.celiac.com/articles/22021/1/Five-Common-Skin-Conditions-Associated-With-Celiac-Disease/Page1.html

Twitches are more than likely due to the lack of magnesium in yoiur diet. Potassium and magnesium both regulate muscle contraction. Some people have trouble with magnesium supplements but are fine with potassium. I was able to get my twitches to stop by using potassium supplements and putting more potassium rich foods in my diet. You can find lots of info on both on the Internet if you want to reserahc it more for yourself.

YoloGx Rookie

Many people have talked about itching and twitching on this site in the process of recovery. How long on average did you find it took for these symptoms to disappear? I don't itch all the time like I used to but now just in the middle and the end of my cycle (about 3 days in the middle and 7 - 10 days at the end). Out of interest has anyone here also suffered from Obstetric or normal cholestasis? I had this with both of my pregnancies and neither time did it stop after pregnancy. Only after being gluten free for 8 weeks or so did it start to diminish.

Could also be salicylate and/or phenol sensitivity. Might be worth looking into. If epsom baths and/or baking soda helps against the itching and twitching, its a good indicator... If it is salicylate or phenol sensitivity, you can find info and both acceptable and non acceptable food lists by trolling the internet. Hopefully it isn't so bad you have to be on a full scale reductive diet like some of us. Meaning being, its better to catch it earlier rather than later...

CR5442 Contributor

Could also be salicylate and/or phenol sensitivity. Might be worth looking into. If epsom baths and/or baking soda helps against the itching and twitching, its a good indicator... If it is salicylate or phenol sensitivity, you can find info and both acceptable and non acceptable food lists by trolling the internet. Hopefully it isn't so bad you have to be on a full scale reductive diet like some of us. Meaning being, its better to catch it earlier rather than later...

This is really useful, thank you! I hadn't thought of Phenols. I've been eating as clean as I possibly can but it seems I might be reacting to my children's playdoh! Someone mentioned B12 so I have taken some foodstate B vits over the last 24 hrs and it does seem to have calmed the twitching down... awesome result! Hopefully as my gut heals the itching will get better too!

AVR1962 Collaborator

This is really useful, thank you! I hadn't thought of Phenols. I've been eating as clean as I possibly can but it seems I might be reacting to my children's playdoh! Someone mentioned B12 so I have taken some foodstate B vits over the last 24 hrs and it does seem to have calmed the twitching down... awesome result! Hopefully as my gut heals the itching will get better too!

Benefits of B12: Open Original Shared Link

Symptoms of magnesium deficiency, scroll down to muscle spasms and twitches: Open Original Shared Link

YoloGx Rookie

This is really useful, thank you! I hadn't thought of Phenols. I've been eating as clean as I possibly can but it seems I might be reacting to my children's playdoh! Someone mentioned B12 so I have taken some foodstate B vits over the last 24 hrs and it does seem to have calmed the twitching down... awesome result! Hopefully as my gut heals the itching will get better too!

Glad to be of help. Hadn't heard that about Playdoh!! Does it have gluten in it?? Or Phenols??

I have had contact poisoning just from touching wintergreen and aloe...

Let us know how it goes and what you discover.

I too am still discovering more over time. For some of us it takes a while... Am so very greatful I am sleeping better these days. The Epsom Salt baths help me hugely plus taking MSM and of course the B vitamins (co-enzyme complex for me to absorb them) and various minerals including the magnesium (an essential ingredient to stop the twitchies).

Recently I also have discovered homeopathics really help me sleep. I take the homeopathic Sulpher with Hyland's Bioplasma cell salts and it makes a huge difference too in improving my skin as well as sleep. If I still can't sleep, I take their insomnia remedy. For homeopathics to work one has to be off all caffeine (including chocolate) as well as mint (full of salicylates anyway).

And for some reason, although I tolerate maple syrup quite well, I don't tolerate sugar at all. If I have even a smidgen of it I don't sleep and twitch away...

Bea

CR5442 Contributor

Just a quick update. After a little thinking I remembered linseed tea that my nutritionist had me on when pregnant with my daughter four years ago. That seems to have calmed a lot of my symptoms down of itching and twitching. The acupuncturist said my blood was dirty last time. Apparently the mucilage from the linseed helps absorb and elimination of toxins from the liver, without allowing their reabsorption in to the blood stream from the gut. Awesome! I'm also taking some goldenseal and echinacea for an earache related to a cold my children have come out with. Strangely I'm not getting any adverse affects from the echinacea... i.e. no blowing up of symptoms. Might mean that finally my gut is starting to heal... only 12 weeks since I gave up gluten for good so there is light! I tried upping the Vitamin B's but had some dreadful lucid dreaming going on so thought probably better to just take one good multivit for the time being. :D Thanks so much for all your input.


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AVR1962 Collaborator

Just a quick update. After a little thinking I remembered linseed tea that my nutritionist had me on when pregnant with my daughter four years ago. That seems to have calmed a lot of my symptoms down of itching and twitching. The acupuncturist said my blood was dirty last time. Apparently the mucilage from the linseed helps absorb and elimination of toxins from the liver, without allowing their reabsorption in to the blood stream from the gut. Awesome! I'm also taking some goldenseal and echinacea for an earache related to a cold my children have come out with. Strangely I'm not getting any adverse affects from the echinacea... i.e. no blowing up of symptoms. Might mean that finally my gut is starting to heal... only 12 weeks since I gave up gluten for good so there is light! I tried upping the Vitamin B's but had some dreadful lucid dreaming going on so thought probably better to just take one good multivit for the time being. :D Thanks so much for all your input.

Linseed tea, very interesting. I will have to check into that. Thanks or sharing that info.

YoloGx Rookie

Linseed tea, very interesting. I will have to check into that. Thanks or sharing that info.

Myself--I have always been sensitive to Linseed...AVR, Not meaning to put a wet blanket on it, however with Sals I learned much later you have to be careful of seeds and nuts in general...

Bea

CR5442 Contributor

Myself--I have always been sensitive to Linseed...AVR, Not meaning to put a wet blanket on it, however with Sals I learned much later you have to be careful of seeds and nuts in general...

Bea

Yes, I agree with this. But the tea doesn't contain the linseed, only the mucilage. Anyhow, last night I had a reaction to something so I'll cut out the goldenseal/echinachea to see if it's that, otherwise it's the linseed! I did react to raw linseeds but I think that was the moulds as they were quite old. Yesterday I upped the Goldenseal/Ech mix a little, that might be what did it. Or it might just be me and the time in my cycle. My tummy tends to get wierd at the middle and the end. Or it could be the cold?!

AVR1962 Collaborator

Thanks Caroline and Bea for the info!

CR5442 Contributor

Yes, I agree with this. But the tea doesn't contain the linseed, only the mucilage. Anyhow, last night I had a reaction to something so I'll cut out the goldenseal/echinachea to see if it's that, otherwise it's the linseed! I did react to raw linseeds but I think that was the moulds as they were quite old. Yesterday I upped the Goldenseal/Ech mix a little, that might be what did it. Or it might just be me and the time in my cycle. My tummy tends to get wierd at the middle and the end. Or it could be the cold?!

I'm really agreeing with you now! I'm inflamed beyond belief this morning. Something I took/ate over the last few days has been working on my system. It could be a number of things so back I go to gluten-free sausages and peas for two meals a day and chicken for one. I am sooooo bored of eating like this!!! Any tips for keeping the constipation from setting in? I think taking anti-constipation stuff like aloe, magnesium, only adds to the inflamation and imbalance of water in the body/bowel.

YoloGx Rookie

Yes, I agree with this. But the tea doesn't contain the linseed, only the mucilage. Anyhow, last night I had a reaction to something so I'll cut out the goldenseal/echinachea to see if it's that, otherwise it's the linseed! I did react to raw linseeds but I think that was the moulds as they were quite old. Yesterday I upped the Goldenseal/Ech mix a little, that might be what did it. Or it might just be me and the time in my cycle. My tummy tends to get wierd at the middle and the end. Or it could be the cold?!

Just be careful. I believe echinacea, despite all its wonders, is an immune stimulant--something we as celiacs need to avoid. I believe goldenseal is OK--though its worth checking out further considering your sals problem. Dandelion traditionally is safe however both for celiacs and borderline sals folks. Parsley and garlic are completely safe all around. If you can tolerate lemon or lime, make a hot drink with it -- it should help cut the mucous. Hot chicken/vegetable/rice soup is also of great help (celery, peeled chopped yam, cabbage, green onions if you can tolerate them, and string beans, with lots of garlic and parsley added in at the end). If none of this is sufficient, consider homeopathics. I know Hylands makes a "complete flu care". Just make sure you are taking no caffeine and no mint anything (or other herbs from the mint family) and it should work well.

Hope you get well soon!

Bea

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
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