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Itchy/tingly Big Toes And Fingers
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Hi Everyone,

My son started complaining of stomach cramps that would come and go after he ate when he was 6. After seeing various doctors and doing an ultrasound for his digestive system (he fasted then they gave him the barium as they observed) the doctor said it could be a stomach virus since nothing seemed to be wrong in the images. After some research online I asked the doctor for a Lactose test to which my son tested positive. We eliminated dairy, though sometimes he would eat dairy with Lactaid pills, but even when he would be dairy free for weeks he would still suffer from the stomach aches. After a while, he started complaining that his two big toes itch, then his fingers and his private part started itching, now he says his tongue and chin are itching. After seeing several podiatrists and a dermatologist and using every itch cream and antibiotic under the sun we decided to see a neurologist, he tested him with what seemed to be small electric shocks, but nothing came out of this test either, he is fine we were told, this was a few weeks ago. Last week he threw up after eating Nacho Doritos with Lactaid pills (my son hasn't thrown up since he was 8 months old!)

By chance I stumbled on this forum, and the words CELIAC DISEASE appeared, I read and read and was astonished, the symptoms my boy has been complaining from are those of Celiac Disease. It dawned on me that with his stomach pain he had occasionally complained of headaches, his bones hurting, his chest hurting. He went in for the blood test this Monday, we are still waiting on the result.

We eliminated gluten just this week, for 2 nights in a row (yesterday and the day before) we were at the hospital because my son's itching and tingling in his toes and fingers was out of control, he has never gone through this before, it seemed like an attack, he was yelling and rolling on the bed. He usually copes by pressing his fingers on the sofa, pressing his toes on the floor or by rubbing them together, but he could not handle the severity these past 2 nights (it seems to get worse around bed time too.) The hospital gave him Benadryl and we put ice packs on his toes as he cried himself to sleep. Today we called his doctor and he prescribed HYDROXYZINE to give to him if this happens again, he also advised us to take him to a children's hospital if the attack became out of control.

As we wait for the diagnosis, I am terrified that even with a gluten-free diet this problem will persist, I wish I could feel this itching and tingling to grasp what he's going through, it is heartbreaking to watch his quality of life deteriorate because his toes and fingers itch, it is non-stop, as he does his homework, as he watches TV, as he talks to me about his friends and eats and showers! Please enlighten me and share with me your experiences. I read somewhere here that as the nerves heal after stopping gluten, the sensation would get worse before getting better, what is to expect and how to help a kid who says "I don't want to feel anything anymore?"

P.S My son was allergic to eggs but grew out of it, he also has Spring allergies but recovers as summer sets in.

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Oh how frustrating. I know how awful it is when your baby is suffering. I used to itch uncontrollably before going gluten free. Did every allergy test known to man, and I am not "allergic" to anything. But still, Zyrtec made it tolerable. After going gluten free, I developed terrible neuropathy in my feet, then in moved up all the way to my face. It was awful. Zyrtec seemed to help that some, too. It did get better after 2-3 months. I think the body just goes nuts after you remove the "poison." I will be thinking good thoughts for you and your son.

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Oh how frustrating. I know how awful it is when your baby is suffering. I used to itch uncontrollably before going gluten free. Did every allergy test known to man, and I am not "allergic" to anything. But still, Zyrtec made it tolerable. After going gluten free, I developed terrible neuropathy in my feet, then in moved up all the way to my face. It was awful. Zyrtec seemed to help that some, too. It did get better after 2-3 months. I think the body just goes nuts after you remove the "poison." I will be thinking good thoughts for you and your son.

Thank you so much for replying, I honestly don't know what I would've done if it weren't for this website and all the personal stories here, I do hope you always feel well, thank you for your good thoughts and we are sending you some right now as well :)

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You're very welcome. The good news now is that I feel fantastic. Better than I have in 20 years :P

I have a 9 yr old, too. He has Celiac, and is now having some thyroid issues. It is so much harder to deal with when it is your little boy :( I am working hard on both of us having a positive attitude, and doing whatever we need to do to make him better.

Yes, this forum has been a lifesaver, for sure!

Janie

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You're very welcome. The good news now is that I feel fantastic. Better than I have in 20 years :P

I have a 9 yr old, too. He has Celiac, and is now having some thyroid issues. It is so much harder to deal with when it is your little boy :( I am working hard on both of us having a positive attitude, and doing whatever we need to do to make him better.

Yes, this forum has been a lifesaver, for sure!

Janie

So sorry to hear about your little one Janie, it seems that symptoms hit everyone differently, it's such a confusing condition! I'm really glad to hear that you've improved, it gives us hope, and you're absolutely right about dealing with this in a positive manner, I wish I remembered that more often.

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I'm sorry your little guy is itching! My kids suffered more severe eczema than even the specialists were familiar with around the area. I tried EVERYTHING with a combined 12 years of suffering a research. I can remember one time driving 20 miles in a snow storm to the hospital because I was at my wits end so I completely sympathize with you.

My son still gets itchy on his palms and soles sometimes and one thing that does seem to help when this happens is essential oil of Lavender. Nothing else helps him. I found very little that helped the severe eczema. My kids haven't been diagnosed yet so I don't know if they have Celiacs or not but you could give the oil a try if you want. It's reasonably priced and available at health stores (just get the pure essential oil... nothing in a carrier oil... no fragrance oils, etc).

Good luck and blessings~

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I'm sorry your little guy is itching! My kids suffered more severe eczema than even the specialists were familiar with around the area. I tried EVERYTHING with a combined 12 years of suffering a research. I can remember one time driving 20 miles in a snow storm to the hospital because I was at my wits end so I completely sympathize with you.

My son still gets itchy on his palms and soles sometimes and one thing that does seem to help when this happens is essential oil of Lavender. Nothing else helps him. I found very little that helped the severe eczema. My kids haven't been diagnosed yet so I don't know if they have Celiacs or not but you could give the oil a try if you want. It's reasonably priced and available at health stores (just get the pure essential oil... nothing in a carrier oil... no fragrance oils, etc).

Good luck and blessings~

Thank you so much for the advice, I will definitely try the pure essential lavender oil. Have you tried eliminating certain foods from your children's diet, are they gluten-free? I hope they're doing better. Itching sounds like a minor condition compared to other severe symptoms but it is life-altering. The nurses and doctors at the hospital called it "discomfort" and a "nuisance" but it is so much more than that, my son is depressed, is worried about going to his friends' houses in case his itchiness worsens and he can't handle it. Thanks again, it's great hearing from you all :)

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One of the things celiac causes is amlabsorption of nutrients in the food we eat. So you can eat a perfectly healthy diet and still not get the vitamins and minerals you need due to the intestinal villi damage and malabsorption it causes. Some of us take liquid B-12 which they say helps with the nerve health and avoids the malabsorption issue since it is absorbed in the mouth. Extra helpings of vitamins in general might be a good idea for a growing kid too. Just be careful of the mutli-vitamins and make sure they are gluten-free, dairy free and soy free. Soy is another bad thing for the intestine.

The best way to start the diet is get off all processed foods and eat only home cooked foods made from whole ingredients.

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One of the things celiac causes is amlabsorption of nutrients in the food we eat. So you can eat a perfectly healthy diet and still not get the vitamins and minerals you need due to the intestinal villi damage and malabsorption it causes. Some of us take liquid B-12 which they say helps with the nerve health and avoids the malabsorption issue since it is absorbed in the mouth. Extra helpings of vitamins in general might be a good idea for a growing kid too. Just be careful of the mutli-vitamins and make sure they are gluten-free, dairy free and soy free. Soy is another bad thing for the intestine.

The best way to start the diet is get off all processed foods and eat only home cooked foods made from whole ingredients.

Thank you GFinDC, this is really helpful, my husband and I were just talking about B12 shots and how they're mentioned in the forums here, we will request them in our next appointment with the GI in April, I really hope they will help. We bought "Super Nutrition Perfect Kids" vitamins which are gluten-sugar-pollen-dairy-corn and soy free from Whole Foods. You're absolutely right about home cooked meals, it's just not worth it to risk our son's health, no more restaurants. Tomorrow we're making mashed potatoes with Lactaid milk and beef cooked in olive oil and onions for dinner.

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    • hey! Wondering if I can get some good info/help from you guys! I just signed up for this website couple weeks ago. Whenever I would Google things this was always the first to pop up and I always found info on things I googled. I am pretty new to the gluten free thing. I had a hernia surgery back in Jan and after that I kept throwing up after eating, the DR. told me it was probably acid reflex caused from surgery but all the meds I tried nothing helped. I went back and was told to cut gluten out. I have been doing so since. When I first started I felt like I had it under control and didn't throw up for 3 weeks, now I find it happening more often. I do buy gluten-free things and read labels to the best I can. My frustration comes from not knowing what its from. How do you know if its from the day before or what you just ate? I hate not knowing. Especially when I haven't had gluten (or so I think) I have been keeping a journal but I just find it so hard. I get this feeling in my stomach and can feel it in my throat. Sometimes I puke once sometimes 5 times! Yesterday for lunch I made an omlet with chicken mushrooms and feta cheese. I threw up almost 20 min after. I have also tried the no dairy thing and it doesn't seem to make a difference so I don't think dairy is an issue as well.
    • I have been on a gluten-free diet for exactly one-year. During that time, I have had no stomach issues or problems when I inadvertently ingested gluten. The other day, I had GI discomfort (no vomiting or diarrhea) and my blood pressure spiked t0 200/98 (normally 119/75). As my GI discomfort subsided, my pressure crept back to normal. This took about 16-hours. I know that I ingested something with gluten, which I had thought was gluten-free.  It never bothered me before. Should I expect that the longer I'm gluten-free, the more susceptible I will be to having a pronounced reaction to inadvertent gluten exposure? Has anyone else had similar experiences with blood pressure spikes?
    • If this is helpful: My local public library had a copy of Breaking the Vicious Cycle by Elaine Gottschall.  There is a Facebook group, I believe it is easily found by searching SCD Diet, and it's a closed group.  If you go directly to the official website of Breaking the Vicious Cycle, there's lots of information for free available, including the basics about the intro diet and beyond.  I would go to the original source of this diet rather than go to other groups/books who have perhaps veered away from Elaine Gottschall's fundamentals. Best wishes to you!
    • AdrienJ, thank you so much! I dream of traveling more one day. I have spondylitis too. I'm so glad that a gluten free and casein free diet is helping you feel your best!
    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
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