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Pain & Numbness on one side of body


BNGed8

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Ivana Enthusiast
1 hour ago, knitty kitty said:

I'm glad your blood work came back without deficiencies, however I must point out that B12, iron and Vitamin D can be stored for long periods of time.  Magnesium is stored in bones for long periods, too.  

There are Eight different vitamins in the group of B vitamins.  Thiamine, riboflavin, niacin, pyridoxine, and folate are not stored in the body for long.  These are water soluble and can easily be lost when you have diarrhea, fever, or emotional stress.  The erythrocyte transketolase test is the most accurate for thiamine deficiency.  Blood tests don't accurately reflect deficiencies.  

Thiamine and magnesium work together.  Thiamine supplementation will help with the muscle twitches and insomnia.

For insomnia, I took L-Theanine, L-Tryptophan, L-Lysine, Pyridoxine B6, and magnesium.  I slept like a rock.  

Vitamin D2 is synthetic.  You will do better taking a Vitamin D3 supplement.  I was very deficient in Vitamin D.  D2 didn't agree with me, but when I switched to D3, I noticed improvements rapidly.

Hope this helps! 

Hello knitty kitty,

seeing that you are knowledgeable about this: is there any vitamin combo that can help with depression/muscle tension? Something that would not be harmful to take even if I might not be deficient in (I don't think I can get my doctor to test me beyond blood and serum which was already done and fine). I tried taking solgar's b complex and magnesium (for a while glycinate, and then chelate) for a few months, but I don't think it made a difference. Thanks!


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knitty kitty Grand Master
(edited)
4 hours ago, Ivana said:

Hello knitty kitty,

seeing that you are knowledgeable about this: is there any vitamin combo that can help with depression/muscle tension? Something that would not be harmful to take even if I might not be deficient in (I don't think I can get my doctor to test me beyond blood and serum which was already done and fine). I tried taking solgar's b complex and magnesium (for a while glycinate, and then chelate) for a few months, but I don't think it made a difference. Thanks!

Yes, the amino acid L-Lysine.  I started supplementing with Lysine because I frequently got cold sores.  I used to take Lysine just when I had a cold sore outbreak, but I researched more on Lysine and found it keeps the cold sore virus at bay and also helps with anxiety and depression if taken regularly.  

Passion flower extract was a big help.  It is very calming.  

Another amino acid that helps is L-Theanine.  Theanine is in chocolate and Oolong tea.   🐱

Yet another is L-Tryptophan.  It's in warm milk and turkey.

I take tryptophan, vitamin B6-pyridoxine, lysine, and magnesium with a cup of Oolong tea an hour or two before bedtime (give them time to digest and get into circulation).  

Getting your Vitamin D level up into the seventies helps.  (Normal levels are too low at thirty or forty.)  Vitamin D works as a hormone at higher levels.

And try Thiamine-B1.  Thiamine helps make those feel good neurotransmitters.  Magnesium needs to work with thiamine.   

Hope this helps! 

"4 Impressive Health Benefits of Lysine"

https://www.healthline.com/nutrition/lysine-benefits

Edited by knitty kitty
Add link
BNGed8 Explorer
9 hours ago, knitty kitty said:

I'm glad your blood work came back without deficiencies, however I must point out that B12, iron and Vitamin D can be stored for long periods of time.  Magnesium is stored in bones for long periods, too.  

There are Eight different vitamins in the group of B vitamins.  Thiamine, riboflavin, niacin, pyridoxine, and folate are not stored in the body for long.  These are water soluble and can easily be lost when you have diarrhea, fever, or emotional stress.  The erythrocyte transketolase test is the most accurate for thiamine deficiency.  Blood tests don't accurately reflect deficiencies.  

Thiamine and magnesium work together.  Thiamine supplementation will help with the muscle twitches and insomnia.

For insomnia, I took L-Theanine, L-Tryptophan, L-Lysine, Pyridoxine B6, and magnesium.  I slept like a rock.  

Vitamin D2 is synthetic.  You will do better taking a Vitamin D3 supplement.  I was very deficient in Vitamin D.  D2 didn't agree with me, but when I switched to D3, I noticed improvements rapidly.

Hope this helps! 

Thank you for your response!

What dosage of Thiamine do you recommend starting on for the best/quickest results. Obviously I know it will take some time, just sucks losing a year to Covid, then the next year to this!

I am also on a prescribed 50k D2 weekly. Primary said I can take other vitamin D daily, but obviously don't over due it. Any recommendations here as well?

Ivana Enthusiast
9 hours ago, knitty kitty said:

Yes, the amino acid L-Lysine.  I started supplementing with Lysine because I frequently got cold sores.  I used to take Lysine just when I had a cold sore outbreak, but I researched more on Lysine and found it keeps the cold sore virus at bay and also helps with anxiety and depression if taken regularly.  

Passion flower extract was a big help.  It is very calming.  

Another amino acid that helps is L-Theanine.  Theanine is in chocolate and Oolong tea.   🐱

Yet another is L-Tryptophan.  It's in warm milk and turkey.

I take tryptophan, vitamin B6-pyridoxine, lysine, and magnesium with a cup of Oolong tea an hour or two before bedtime (give them time to digest and get into circulation).  

Getting your Vitamin D level up into the seventies helps.  (Normal levels are too low at thirty or forty.)  Vitamin D works as a hormone at higher levels.

And try Thiamine-B1.  Thiamine helps make those feel good neurotransmitters.  Magnesium needs to work with thiamine.   

Hope this helps! 

"4 Impressive Health Benefits of Lysine"

https://www.healthline.com/nutrition/lysine-benefits

Thank you for your kind reply. I will look into those. Have to get a bit more proactive about things instead of resigning to the "new normal" me :)

 

knitty kitty Grand Master
7 hours ago, BNGed8 said:

Thank you for your response!

What dosage of Thiamine do you recommend starting on for the best/quickest results. Obviously I know it will take some time, just sucks losing a year to Covid, then the next year to this!

I am also on a prescribed 50k D2 weekly. Primary said I can take other vitamin D daily, but obviously don't over due it. Any recommendations here as well?

Vitamin D2 does not have as great a bioavailability as D3.  

I'm allergic to fish and shellfish, so I couldn't take Vitamin D3 sourced from fish, like cod liver oil.  Some Vitamin D3 is derived from lanolin in wool, not good if you're allergic to wool.  The Vitamin D3 I like is this one...

https://www.naturewise.com/products/vitamin-d3-1000-iu-supplements

My Vitamin D level was in the single digits when tested.  I was prescribed D2, but had a weird aversion to them.  After some research, I changed to D3.  My body liked them so well, I craved them and ate them throughout the day like m&m's for a couple of weeks.  (Not that I recommend doing that.)  The cravings went away as my Vitamin D level rose.  I'm on a maintenance dose now.  

The form of Thiamine I like is this one, Allithiamine.  Shop around.  

https://www.pureformulas.com/allithiamine-fat-soluble-b1ttfd-50-mg-capsule-250-capsules-by-ecological-formulas.html

And another form of thiamine, Benfotiamine, I take is this one.  This form is especially helpful for diabetics.  (I'm Type Two.)

https://www.lifeextension.com/vitamins-supplements/item00925/mega-benfotiamine?gclid=EAIaIQobChMI-qqQ2YTr8QIVxPrICh2yHQOMEAAYASAAEgKlEvD_BwE

Here's an article about these forms of thiamine.

https://www.hormonesmatter.com/navigating-thiamine-supplements/

Here's some articles on high dose Thiamine.  

"SIBO, IBS, and Constipation: Unrecognized Thiamine Deficiency?"

https://www.hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/

And...

"Vitamin B1 Thiamine Deficiency"

https://www.ncbi.nlm.nih.gov/books/NBK537204/

And...

"High-dose Parenteral Thiamine in Treatment of Wernicke’s Encephalopathy: Case Series and Review of the Literature"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354137/#!po=28.2609

And...

"Thiamine Deficiency and Delirium"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3659035/

 

So I was very deficient in thiamine and other B vitamins.  The B vitamins are interdependent, so I took a B Complex (has all the eight B vitamins) as well as the high dose Thiamine with every meal.  B vitamins are water soluble and get expelled in urine quickly.  There's no toxicity level to them.

I had started on Thiamine HCl and got immediate improvement.  Then I researched and found the Allithiamine and Benfotiamine.  They are fat soluble and get into the cells quickly.  The improvements were dramatic.  

I didn't have the intravenous thiamine because my doctors were clueless.  I just took Allithiamine and Benfotiamine in doses equalling the recommended 500mg three times a day.  I've been able to reduce that amount since.

For more of my saga (and tons more research)...

Hope this helps!

 

 

knitty kitty Grand Master
2 hours ago, Ivana said:

Thank you for your kind reply. I will look into those. Have to get a bit more proactive about things instead of resigning to the "new normal" me :)

 

Yes,you do have to learn to be your own advocate.  But there's lots of knowledge and experience here to help and encourage you.

BNGed8 Explorer

Hello,

Not sure if anyone is still following this post but I wanted to get clarity on another symptom I have been having & see if anyone else has experienced this. For the last week or 2 I get what feels like my throat is tightening, which occurs on & off throughout the day. I can still breathe & speak fine, as well as swallow pretty much but it feels kind of like there's a lump when I swallow.

This comes & goes throughout the day and can get me pretty nervous as if my throat is going to shut. I read that Anxiety can cause this, but wanted to see if anyone else has had this due to Celiac.


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Scott Adams Grand Master

@BNGed8 this sounds a bit like it might be an allergic reaction, so you may want to consider getting food allergy testing done. Normally your symptoms would include itchiness, but not always.

Does this happen if you get gluten in your diet, or are you gluten-free and this is happening when you eat other things?

My daughter's primary symptom before she went gluten-free was the feeling that something was stuck in her throat, and this happened whenever she ate gluten. It went away when she went gluten-free.

BNGed8 Explorer
2 hours ago, Scott Adams said:

@BNGed8 this sounds a bit like it might be an allergic reaction, so you may want to consider getting food allergy testing done. Normally your symptoms would include itchiness, but not always.

Does this happen if you get gluten in your diet, or are you gluten-free and this is happening when you eat other things?

My daughter's primary symptom before she went gluten-free was the feeling that something was stuck in her throat, and this happened whenever she ate gluten. It went away when she went gluten-free.

Hey Scott,

So I never seemed to get this before being diagnosed with celiac, and have been gluten free for over a month now. I do think I have been getting sneaky gluten in there throughout the first week or 2, but have definitely been more strict since. No eating out & checking ingredients/scanning with an app every time. Could I have developed an allergy since the diagnoses?

Thanks

Scott Adams Grand Master

It seems unlikely that you would develop an allergy within the last few weeks, and it’s possible that it’s a new reaction to gluten contamination. Some people get very sensitive to gluten after they stop eating it.

BNGed8 Explorer
25 minutes ago, Scott Adams said:

It seems unlikely that you would develop an allergy within the last few weeks, and it’s possible that it’s a new reaction to gluten contamination. Some people get very sensitive to gluten after they stop eating it.

Hey Scott,

Thanks for the information! I am thinking it could have something to do with an upper respiratory thing as well. I have been having this for a week or so, and woke up yesterday with a weird feeling in my chest as well. Kind of sharp pain like I smoked 3 cigars yesterday & pain all throughout my body. Never smoked a cigarette but the occasional cigar I do, but not since my diagnosis. I have now had this weird feeling in my throat for almost an hour straight, which is the longest it has happened. Swallowing seems to be fine, just feels tight & a lump. Hoping it is just anxiety or panic attack making it worse.

Drmthomas Newbie

If you were in an accident or played contact sports before your celiac diagnosis, that may be what triggered your celiac, and your neurological symptoms may be from upper cervical instability and not celiac. 

Scott Adams Grand Master

Welcome to the forum @Drmthomas! I doubt that contact sports would be in any way linked to a trigger for celiac disease, at least I've never seen any studies that indicate this, but there are known viruses that have been linked.

@BNGed8 it sounds like your throat issues could be your body's way of telling you to cut back on the cigars! 

BNGed8 Explorer

I am assuming my Celiac came forth due to the Covid outbreak. I did not experience any symptoms or have a positive testing, but my girlfriend did. I have read from some articles you guys have posted that this could become an issue.

@Scott AdamsIn regards to my throat, I have not touched a cigar in 2 months (since I started feeling ill from celiac), so I do not think this is the issue. It is weird as I still have the tight feeling & when I swallow it feels like a lump or something. As this has been non stop for almost 24 hours, I would assume its time to call the primary just incase. I tried taking a Xanax to see if it would relax me and subside, but no luck. Scary to say the least when symptoms randomly show up and linger.

Scott Adams Grand Master

It would be a good idea to get it checked out, so going to your doctor is a good idea. It's possible that it's a totally unrelated symptom, but in my daughter's case she had the same symptom whenever she ate gluten.

BNGed8 Explorer

@Scott Adams sorry for the questions, but I am trying to learn a lot fast & ask the more experienced people my questions. Did your daughter have an allergic reaction? Or it was just a symptom from celiac when she was eating gluten still. I definitely do think I could have ingested gluten even though I am trying to be careful as I am still new. Do you happen to know what the usual time table is for symptoms to start once you eat gluten. Also how long did the throat "swelling" take to subside in your daughters case. I have started a food journal/diary so want to try and get this out ASAP! Also, I have seen you & multiple people mention dairy being harmful when newly diagnosed. Do you advise to go dairy free for the time being?

Scott Adams Grand Master

The article below may be helpful if you're still having symptoms, and going dairy-free, at least for a couple of months, might be a good idea. 

In my daughter's case we believe it was possible celiac disease causing the issue, but her antibody tests came back just under the cut off for celiac disease, so she's officially non-celiac gluten sensitive. It did not seem like an allergy, she had no itching, just the feeling that there was always food still stuck in her throat, even after drinking a full glass of water. 

 

BNGed8 Explorer

@Scott Adams Great read! I will try the dairy free for a few months to see how it goes. The only one I am not sure if I can handle is no eggs! But anything to help the body recover and not cause any further damage that may not be reversible.

Scott Adams Grand Master

You might try duck eggs. I can get them at farmer's markets, Asian markets (make sure there isn't a red marker mark on them--ask for fresh eggs), and some higher end supermarkets (they are often used in French pastries).

BNGed8 Explorer

Hello anyone!

So I have been taking Vitamin Supplements for about 2 weeks now & wanted to make sure the ones I am taking are fine. I am taking the Spring Valley (Walmart Brand) B1, Magnesium, & B Complex. It states No Gluten on it, but some of my other vitamin brands says Gluten Free. The definition of No Gluten I found was;

"Manufacturers might use the term "no gluten ingredients" instead of "gluten-free" if they don't want to test a product for gluten or are concerned that a product might not consistently meet that FDA standard of 20 parts per million."

Does anyone know if these are still alright to take? I should I be looking for vitamins that state Gluten Free on it. Also has anyone taken Spring Valley supplements and had issues?

Thank you again!

Scott Adams Grand Master

I believe that the supplements are probably gluten-free, and would not throw them out, but perhaps switch over to a brand that has "gluten-free" on the label.

Posterboy Mentor
7 hours ago, BNGed8 said:

Hello anyone!

So I have been taking Vitamin Supplements for about 2 weeks now & wanted to make sure the ones I am taking are fine. I am taking the Spring Valley (Walmart Brand) B1, Magnesium, & B Complex. It states No Gluten on it, but some of my other vitamin brands says Gluten Free. The definition of No Gluten I found was;

"Manufacturers might use the term "no gluten ingredients" instead of "gluten-free" if they don't want to test a product for gluten or are concerned that a product might not consistently meet that FDA standard of 20 parts per million."

Does anyone know if these are still alright to take? I should I be looking for vitamins that state Gluten Free on it. Also has anyone taken Spring Valley supplements and had issues?

Thank you again!

BNGed8,

Scott has given you good advice.....they might be gluten free but it is better to go with those labeled to gluten-free to be on the safe side.

But I wanted to  note.....You need to find a good form of the Magnesium and Thiamine aka Vitamin B1...

Knitty Kitty cited the best link on it.....on how to find a good Thiamine form....that is easily absorbed...

And will quote it again for easy reference...so you won't have to go back and find it again...

https://www.hormonesmatter.com/navigating-thiamine-supplements/

But the Benfotiamine form of Thiamine is widely available....

At least one researcher has shown the pain of diabetic neuropathy is, in part, from a Thiamine deficient condition...

Here is the article on it...

https://www.naturalmedicinejournal.com/journal/2018-11/thiamine-deficiency-and-diabetic-polyneuropathy

Oh and the fat soluble B-1 Benfotiamine from is 6x to 7x better absorbed than the kind found in common Thiamine supplements.

The same thing can be said for Magnesium Citrate vs Magnesium Oxide....(Low absorbing forms)....found every where (including walmart).....will not help you the way better absorbing forms like Magnesium Citrate with meals can and will....

Find you a Magnesium Citrate taken with meals and your body will thank you for it....

Also two weeks is probably not long enough to help you with your Neuropathy right away....

B-Vitamins show the most improvement in the 2nd to 3rd month....

Frequency is much more important than size of the supplement and why taken them with meals is important....

2x a day will 2x as fast as 1x a day.....3x a day will help 50 percent faster than 2x a day....you get the idea...

But you need to find the fat soluble B1's like Benfotaimine or Allithiamine or Lipothiamine for best results!

I wrote a Posterboy blog post about why Celiac's should take Thiamine for a "Season in Time" at least....

Maybe it will help you to read it....

Good luck on your continued journey!

I hope this is helpful but it is  not medical advice.

Posterboy,

BNGed8 Explorer


Hello everyone!

I just wanted to update this forum as it may help someone who is going through the exact same thing as me. I tend to search the forums every day/night for similar stories so just want to document this for whoever needs it.

I have decided to get better vitamins/supplements after searching the web for a few days, which hopefully arrive today. I will update on the twitches & pain in a week or so to see if there is any improvement. No improvements yet, but obviously still early.

I also got my Cervical Spine MRI results back from the place that performed it, but haven't heard from the Neurologist. Nothing serious I believe, so they might not even call. I have posted the minimal findings below for anyone curious. Not sure if these can even cause any symptoms;

At C3-4, there is mild disc degeneration with disc osteophyte complex. There is mild right foraminal stenosis due to
uncovertebral osteophyte. There is no significant central canal or left foraminal stenosis.

At C4-5, there is mild disc degeneration with disc osteophyte complex. There is no significant central canal or foraminal
stenosis.
At C5-6, there is mild disc degeneration with disc osteophyte complex and minimal central annular fissure. There is no
significant central canal or foraminal stenosis.
At C6-7, there is mild disc degeneration with with minimal central disc protrusion. There is no significant central canal or foraminal stenosis.

 

I am also looking for any advice or information. So as mentioned previously, I have been experiencing what seems to be a tightness in my throat. This has not gotten better or worse & my primary asked if I wanted to come in for additional blood tests, which I might. It feels like phlegm may be caught in my throat which is causing this? As I only get the feeling when I swallow saliva, not food or liquids. I do have a Vitamin D deficiency, which I read could make it easier for me to get a cold or maybe even seasonal allergies? Just wanted to see if anyone else had a build up in mucus or phlegm in the nose or throat with thick saliva at times. Also feels as if my throat or mouth get very dry at points, which could contribute? I am also currently on Pantoprazole 20 MG (MFG  Mylan) for reflux/GERD. Could this also be causing any issues?

Thank you again for all the advise to help me through this journey!

JDlucille Newbie

Experiencing the same!  Plus vitamin D and iron deficient . I take 5,000 units of D daily with a vitamin C/ zinc ore and probiotic supplement . Went through 6 iron infusions last year. Just completed my 4 th this year. I was getting nervous about difficulty swallowing . I choke , I cough all the time . ( not something you want to do right now . You get the Covid glare)  ENT scoped my vocal cords . Suspecting EOE, need to go through allergy testing and biopsy’s of my esophagus. Numbness and tingling in arms affects sleep. Recent numbness that comes and goes in feet . 
 

ENT keeping my meds the same right now . Thinks we are on the right track 

baby asa, vitamin d 5000 units , omeprazole , zyrtex, azelestine nasal spray twice a day , b12 , vitamin c/ zinc pro and pre biotic . Liver refresh ( made by now )  ( do not take omeprazole or Zyrtec at the same time as supplements . ) pro- air as needed, singulair at night and atorvastatin.  Used to take magnesium daily snd probably would not hurt but will follow up with my GI of concerns of MALABSORPTION. 

cbd topical for pain ( try to avoid Tylenol and Motrin ... used to pop like candy) 
 

 

Drmthomas Newbie
59 minutes ago, BNGed8 said:


Hello everyone!

I just wanted to update this forum as it may help someone who is going through the exact same thing as me. I tend to search the forums every day/night for similar stories so just want to document this for whoever needs it.

I have decided to get better vitamins/supplements after searching the web for a few days, which hopefully arrive today. I will update on the twitches & pain in a week or so to see if there is any improvement. No improvements yet, but obviously still early.

I also got my Cervical Spine MRI results back from the place that performed it, but haven't heard from the Neurologist. Nothing serious I believe, so they might not even call. I have posted the minimal findings below for anyone curious. Not sure if these can even cause any symptoms;

At C3-4, there is mild disc degeneration with disc osteophyte complex. There is mild right foraminal stenosis due to
uncovertebral osteophyte. There is no significant central canal or left foraminal stenosis.

At C4-5, there is mild disc degeneration with disc osteophyte complex. There is no significant central canal or foraminal
stenosis.
At C5-6, there is mild disc degeneration with disc osteophyte complex and minimal central annular fissure. There is no
significant central canal or foraminal stenosis.
At C6-7, there is mild disc degeneration with with minimal central disc protrusion. There is no significant central canal or foraminal stenosis.

 

I am also looking for any advice or information. So as mentioned previously, I have been experiencing what seems to be a tightness in my throat. This has not gotten better or worse & my primary asked if I wanted to come in for additional blood tests, which I might. It feels like phlegm may be caught in my throat which is causing this? As I only get the feeling when I swallow saliva, not food or liquids. I do have a Vitamin D deficiency, which I read could make it easier for me to get a cold or maybe even seasonal allergies? Just wanted to see if anyone else had a build up in mucus or phlegm in the nose or throat with thick saliva at times. Also feels as if my throat or mouth get very dry at points, which could contribute? I am also currently on Pantoprazole 20 MG (MFG  Mylan) for reflux/GERD. Could this also be causing any issues?

Thank you again for all the advise to help me through this journey!

Hi, your symptoms are very similar to mine, I have celiac, neurological symptoms, vitamin D deficiency, Gerd/hiatal hernia. It wasn’t the celiac that was causing my GERD, it was upper cervical instability, after a few prolotherapy treatments my neurological and digestive symptoms were completely gone. If you’re having issues with your neck, you may have the same injury. MRI usually won’t spot the issues, especially if lay down MRI. Check out, https://www.caringmedical.com/prolotherapy-news/gerd-neck/amp/

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      Soy has been on our safe list for nearly 30 years, it is gluten-free. Most soy sauces do include wheat, and should be avoided. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.       In general if you see "gluten-free" on a label in the USA, Canada, Europe, Australia, etc., it does mean that the food is safe for those with celiac disease, and it does NOT mean that there is 19ppm gluten in it, as some people might lead you to believe. Whenever a company detects gluten in the 5-19ppm (most tests can't accurately go below this level) in foods which they have labelled gluten-free, especially a USA-based company (lawsuits in the USA are far more common and easier to win in such cases), they will immediately seek to find and eliminate the source of the gluten contamination. There is a very common myth or misconception that companies don't care at all if their products test between 5-19ppm, but they definitely do because a product recall could be just around the corner should they hit the 20ppm or higher level. Many people, including myself, now have home test kits like Nima, and companies are definitely aware of this.  
    • trents
      Kathleen, I am not sure I agree with you that your son is asymptomatic with regard to his celiac disease. The horrible stomach pains you describe in your first post could be celiac symptoms as easily as they could be H. Pylori or viral infection symptoms. Yes, the social impact of having celiac disease is perhaps the most difficult dimension of the disorder to deal with. It requires thinking ahead and providing safe substitutes for snacks and party foods so that your son doesn't feel left out and singled out or different. Some of those feeling are unavoidable but they can be minimized. Dining at eateries is a huge challenge to celiacs as even when you order gluten free menu items they are often heavily cross contaminated back in the kitchen from being cooked together with wheat things or handled with the same utensils. You need to be bold in asking a lot of questions and requesting that your son's food be cooked in separate pots and pans. It's awkward at first but you get used to it. Speaking of CC (Cross Contamination), how careful you have to be with this will depend on the sensitivity level to gluten your son will demonstrate. This can be a challenge to get a handle on for those celiacs who are of the "silent" type. By "silent" is meant they are largely asymptomatic. It is common for sensitivity levels to increase over time when gluten is withdrawn from the diet as whatever tolerance we may have had to gluten when we were being exposed to it constantly may disappear. Whether or not that proves to be the case, it would be important for you to have his antibody levels checked at regular intervals (say every six months to a year) to check for compliance with the gluten free diet. And I would not worry about him touching wheat food products. It is highly unlikely that any significant exposure will occur transdermally. That would only be an issue for the most extremely sensitive subset of celiacs. Of course, you wouldn't want him getting wheat flour on his hands and then putting fingers in his mouth.  At school, you will need to pack his lunches and also have conversations with the school dietary staff to ensure his safety.  I know this all seems overwhelming right now but you are not the only parents who are having to go through this kind of thing. Celiac disease is not uncommon and thankfully there is much more public awareness about it than there was a generation ago. It can be done. It's the kind of thing that requires parents to be willing to find that extra gear of assertiveness in order to keep their child safe and to guard his/her psyche as much as possible. Count your blessings. It could be worse. He doesn't have cancer. This might be helpful in getting off to a good start with eating gluten free. Some of it may be overkill depending on how sensitive to minute levels of gluten your son is:  
    • trents
      Staci, take note of the forms of magnesium and zinc I recommended. With some of the vitamins and minerals, the formulation can be very important in how well they are absorbed. Many of the vitamin and mineral products on supermarket shelves are in a form that maximizes shelf life rather than bioavailability which, in your case, would seem to be a critical issue. And with magnesium, if you use the typical over the counter form (magnesium oxide) you may find it has a definite laxative effect (think, "milk of magnesia") simply because it isn't well absorbed and draws water into the colon. Spend some extra money and get quality vitamin and mineral products and research the issue of bioavailability. There are forum members who are knowledgeable in this area who may have recommendations. Do you have Costco stores where you live? Is Amazon available to you?
    • Kathleen JJ
      And yes, of course it's better to know and we will adjust.  It's just, he's 7 and in our house we can control what he gets. But he plays soccer 3 times a week and in the changing room the boys share candies. I can and will tell him not to accept them any more, but "mistakes" will be made.   I'm really burdened by the potential social impact for him. He so loves to go to a restaurant as a family - I'll guess that's finished. Going to birthday parties at another kids house? I am reading about Coeliacs and apparently the fact that something as much as TOUCHED something with wheat is enough, even if he doesn't feel the symptoms - how can we control that bar from keeping him locked up?    And the worst worry of all: how do you tell a little boy to do all of this to not have symptoms that he does not have. If he'd been having horrible diarrhea or feeling really tired, we could tell him 'see, you feel so much better now, that kind of food was just not good for your body', but now, what will our argument be? For clarity: of course we will put him on the diet, I am not saying I don't believe in the necessity of that, it is just that it will be quite a stretch to 'sell' it to him 😞
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