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Vitamins?

Tigercat17

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Tigercat17 Enthusiast
Tigercat17
Posted

Hi everyone,

I really hope someone help me figure this out. I've been gluten free for about a year and a half now. I was wondering if anyone else had reactions to vitamins that are supposed to be gluten free? To make a long story short, I just had a larparoscopy done for enlarged lymph nodes in my stomach a month ago and I really think it was all because of the vitamins I was taking. I also had dizziness, headaches, fatigue, stomach tenderness, lost weight, night sweats and low grade fevers daily. My symptoms started in Feb and continued for two months. The doctors had to rule out lymphoma and performed a lymph node biopsy. Luckily the path report came back reactive lymph node. So they sent me to a rheumatologist to check me for other autoimmune diseases since they supected that it was an autoimmune reaction. All the tests came back negative. I was always studying my food journal to look for any patterns that might point to my symptoms being a gluten issues but I really didn't see any until I noticed that on the days that I didn't take two of my vitamins, I didn't have a fever that day. And it was always at night that I got the fevers and I always take my vitamins in the evening.

I stopped all my vitamins a little over two weeks ago and I'm starting to feel so much better. The fevers and night sweats stopped the day after I stopped taking them and I'm slowly starting to get my energy back. And I'm not losing weight anymore. (Also, I didn't change anything else with my diet, I don't eat out much if at all and I always had a gluten free kitchen)

Here's what I was taking:

1.Slow Fe Iron-I started this on back up and so far I haven't had any reactions to them and I really need iron.

I really suspect it was one or two of these but I'm really too afraid to try them again to find out:

2.GNC vitamins Utra Womens Multi vitamins - I just started these in Jan so I really suspect one of these.

3.GNC fish oil triple strength

4. Vitafusion Gummy Vitamins Calcium 500 - I was taking these for the last ten months with no problems, but I noticed they did change their labeling and product in the last three months and these two bottles were the newer venison. I also seen a strong pattern with this brand so I really don't want to start these up again at all.

5. Vitafusion Gummy Vitamins C 250

I did just call the Vitafusion company to see if there were any changes made to the product, but they told me no, but I think the rep. herself really didn't know that information. Blah-Blah-Blah... They are going to send me a refund and I have to mail them the vitamins to them so they can check them.

I am really wondering if maybe I am just too sensitive to take vitamins even if they do say gluten free. I've tried others- Country Life, Megafoods, Members Mark, Giant Eagle Brand, and now GNC, Vitafusion and I always end up having reactions to them. These last three months were the worst. I'm really ready to give up on all vitamins but I do have ostopenia, anemia, vitamin D deficiency, so I really need to take iron, calcium and vitamin D.

Does anyone have any ideas or suggestions? Has anyone had similar problems with vitamins? I just feel like I'm the only one...

Thanks everyone!

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IrishHeart Veteran
IrishHeart
Posted

Nope, you are not the only one! ;)

I have deficiencies & osteopenia too and need to take them as well.

Okay, let's figure this out...step by step.

My first thought was the fish oil.

Do you have a problem with fish?

I had to hunt around and find ones that do not bother me. I found that some of the gummy ones have all kinds of sugars and citric acid and dyes in them. They made my tummy and mouth burn and I flushed hot and pink. Very strange.

Also, many vitamins contain SOY LECITHIN and that may be the culprit. It is for me.

Ones that are top- 8 allergen free are made by NOW and they are not very expensive and I have never had a reaction whatsoever. I use sublingual methyl B-12, D-3, calcium Citrate (with Mag and D--make sure they are the V caps--they are the only ones that are soy-free) and the B-complex from them. CHECK the LABELS, of course. They do not make a multi without soy though, so I use Pioneer ...in fact, I bought them from this website's gluten-free mall.

The fish oil without soy I use is Jarrow. It is hard to find a fish oil NOT infused with soy oil.

If you want to know where I buy them inexpensively, PM me and I will tell you. i think they have to edit it out if I put it here.

But, before you buy all these, I would say just try ONE and see if you react.

Hope this helps!

Tigercat17 Enthusiast
Tigercat17
Posted
  • Author

Hi Irish heart,

Thanks for all your help once again! I'm still have a hard time believing these vitamins made me that sick, but I know they were... It's really crazy. I know I'm feeling so much better since I stopped them, but I'm still not 100%. I feel like I got glutened for two months, but at the time I didn't know what it was since I usually have acid reflux. I wonder if it was just a small amount. But now my acid reflux is back. It started about a month ago and my hair is thinning again like it did when I got really sick before I was diagnosed with celiac.

I don't have any problems with fish, but I also wondered if it was the soy in the GNC fish oil and GNC Multi vitamins that I was causing all my reactions. I started them a month before I started having the night sweats and fevers. I'm not sure if it would take me that long to have a reaction to them? But it is interesting.

Also, though out this even though I felt like I was getting gluten, my Tissue Transglutaminase IgA blood work continued to stay normal. My GI doctor tested me twice during this time. But my sed rate was up to 66 last month and now it's 43- it's starting to slowly come down since I stopped the vitamins.

Do you think I could get cross containmented with gluten and still have normal IgA blood work? I wonder if I have to get a good amount of gluten now since my intestines are healed from the celiac? :unsure:

Thanks so much for the info about the Pioneer and the NOW vitamins. I did check them out. I was thinking about trying the GNC vitamins next week to see if I have a reaction again, but I'm not sure if I should try it or not. :unsure:

Thanks so much Irish Heart! You're such a big help! :)

BTW -I Love your avatar picture! I have two cats myself -I white & black one and a gray cat. They're my babies!

ravenwoodglass Mentor
ravenwoodglass
Posted

I have a problem with soy in some vitamins that are gluten free. I started taking one for my hair and nails to help with hair loss that said gluten free. They really didn't seem to help at all. The new label on the vitamin stated it contained soy and I had missed that. I now take almost all NOW brand and Nature Made for Cod Liver Oil (that was the only one I could find without soy).

Glad to hear you are feeling better now that you have stopped the brands you were taking. You could try adding them back one at a time for a month or so and see if you react to an individual one but not some others.

IrishHeart Veteran
IrishHeart
Posted

Do you think I could get cross containmented with gluten and still have normal IgA blood work? I wonder if I have to get a good amount of gluten now since my intestines are healed from the celiac? :unsure:

I am not sure. Perhaps someone with more knowledge regarding testing would be able to answer this question for you.

ravenwoodglass Mentor
ravenwoodglass
Posted

Do you think I could get cross containmented with gluten and still have normal IgA blood work? I wonder if I have to get a good amount of gluten now since my intestines are healed from the celiac? :unsure:

Since we have to heavily gluten load for at least a couple of months for tests to have a chance to be positive after we have been gluten free, and some of us test negative even on a full gluten diet before diagnosis then I do think that you could be getting CC'd and still have normal blood tests.

IrishHeart Veteran
IrishHeart
Posted

Since we have to heavily gluten load for at least a couple of months for tests to have a chance to be positive after we have been gluten free, and some of us test negative even on a full gluten diet before diagnosis then I do think that you could be getting CC'd and still have normal blood tests.

Makes sense to me! ;) I knew Raven could help us clarify things. :)

Just try adding one vitamin back in at a time --wait a week in between---and see how you do. Sometimes, too many supps/vits at once can complicate the method of isolating what's causing what.

Good luck, hon!

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Chad Sines Rising Star
Chad Sines
Posted

Hi Irish heart,

Thanks for all your help once again! I'm still have a hard time believing these vitamins made me that sick, but I know they were... It's really crazy. I know I'm feeling so much better since I stopped them, but I'm still not 100%. I feel like I got glutened for two months, but at the time I didn't know what it was since I usually have acid reflux. I wonder if it was just a small amount. But now my acid reflux is back. It started about a month ago and my hair is thinning again like it did when I got really sick before I was diagnosed with celiac.

I don't have any problems with fish, but I also wondered if it was the soy in the GNC fish oil and GNC Multi vitamins that I was causing all my reactions. I started them a month before I started having the night sweats and fevers. I'm not sure if it would take me that long to have a reaction to them? But it is interesting.

Also, though out this even though I felt like I was getting gluten, my Tissue Transglutaminase IgA blood work continued to stay normal. My GI doctor tested me twice during this time. But my sed rate was up to 66 last month and now it's 43- it's starting to slowly come down since I stopped the vitamins.

Do you think I could get cross containmented with gluten and still have normal IgA blood work? I wonder if I have to get a good amount of gluten now since my intestines are healed from the celiac? :unsure:

Thanks so much for the info about the Pioneer and the NOW vitamins. I did check them out. I was thinking about trying the GNC vitamins next week to see if I have a reaction again, but I'm not sure if I should try it or not. :unsure:

Thanks so much Irish Heart! You're such a big help! :)

BTW -I Love your avatar picture! I have two cats myself -I white & black one and a gray cat. They're my babies!

What struck me in your reply is the reflux vs celiac symptoms. I do think for a lot of us this is a point of confusion when it comes to figuring ourselves out. Many of my reflux symptoms feel like celiac and vice versa. And as we all know, too much acid reduction from meds causes all sorts of issues.

Tigercat17 Enthusiast
Tigercat17
Posted
  • Author

Thanks everyone for your replies! It's very informative and it helped a lot!

Thank-you Ravenwoodglass! This does make a lot of sense to me! I do really think this was gluten related. It would explain all of my symptoms. I'm really not sure if it was soy or not since I'm still eating small amounts of soy and I'm still getting better. It's been slowly, but I think if I was getting CC for two months, it's going to take me about 1-2 months to be 100%.

My doctor even called off the capsule endoscopy for me since I'm feeling better. I think he suspects, too, that this was my celiac disease reacting to CC from the vitamins.I haven't talked to him since, but I'm due to see him again in two weeks, so I'll have a lot of questions for him.

I also think my symptoms for reacting to CC are changing since I've been gluten free for about 20 months now. I think the only good thing that came out of this is at least now I know that if I'm ever feeling dizzy, headaches, tried, chills and a fever that I'll have to look for CC from gluten.

I think I will try the GNC vitamins first since I really suspect it was the Vitafusion. I'll let you all know how it goes and I won't add anything else for a month. :)

Thanks Chad - I'm not taking anything at all for my acid reflux. It's very mild, but I do notice that my throat gets a little sore and it's sometimes will be uncomfortable to talk. The only meds I take are Levoxyl for my thyroid. I was taking Percocet for two weeks after the surgery. I'm not sure not sure if that would cause some acid reflux or not.

Thanks again everyone! :)

Chad Sines Rising Star
Chad Sines
Posted

Thanks everyone for your replies! It's very informative and it helped a lot!

Thank-you Ravenwoodglass! This does make a lot of sense to me! I do really think this was gluten related. It would explain all of my symptoms. I'm really not sure if it was soy or not since I'm still eating small amounts of soy and I'm still getting better. It's been slowly, but I think if I was getting CC for two months, it's going to take me about 1-2 months to be 100%.

My doctor even called off the capsule endoscopy for me since I'm feeling better. I think he suspects, too, that this was my celiac disease reacting to CC from the vitamins.I haven't talked to him since, but I'm due to see him again in two weeks, so I'll have a lot of questions for him.

I also think my symptoms for reacting to CC are changing since I've been gluten free for about 20 months now. I think the only good thing that came out of this is at least now I know that if I'm ever feeling dizzy, headaches, tried, chills and a fever that I'll have to look for CC from gluten.

I think I will try the GNC vitamins first since I really suspect it was the Vitafusion. I'll let you all know how it goes and I won't add anything else for a month. :)

Thanks Chad - I'm not taking anything at all for my acid reflux. It's very mild, but I do notice that my throat gets a little sore and it's sometimes will be uncomfortable to talk. The only meds I take are Levoxyl for my thyroid. I was taking Percocet for two weeks after the surgery. I'm not sure not sure if that would cause some acid reflux or not.

Thanks again everyone! :)

I really think our GI systems are so wonky that many issues are so multifaceted that it is nearly impossible to figure out. Reducing gluten reduces many issues but maybe a dairy issue is causing nausea and then the soy and then the corn. So in the end we get no complete relief from anything so it is a constant struggle. So nice that there are a group of people who understand these issues.

GFinDC Veteran
GFinDC
Posted

I've had problems with vitamins. Especially the multi-vitamins. I have tried various brands that are supposed to be GFCFSF but none has ever worked for me. I have some of the Pioneer multi-vit too, but don't take them anymore. What I do take is calcium, D and zinc pills. And a B-12 pill sometimes, or a B-complex. I don't take any vitamin pills every day. And the ones I take are not grandiose fix everything pills with everything but the kitchen sink in them. Those kind always cause me problems. I suspect the retinal palmitate (vit-A) in the Pioneer multi-vits is a problem but that is just a think on my part. It doesn't really matter since I get sick if I take them, so I don't take them. When I have done elimination diets in the past that is always one of the first things I have eliminated, vitamin pills. When I went off soy completely it took a couple weeks to start feeling better, and a month and a half to really feel pretty ok. Some of these things can take some time.

etta694 Explorer
etta694
Posted

I was going to ask about the source of the vit E in the multi but I guess if they say gluten free... then that shouldn't be an issue.

Cattknap Rookie
Cattknap
Posted

I don't have any sage advice other than this general statement - most people take too many vitamins. Based on doctor and nutritionist advice I take only vitamin E, C, calcium, D, and iron complex - that is it. Both my doctor and my nutritionist advised me only to take those supplements that my blood tests show I need and both stated that many people take too many unneeded vitamins.

IrishHeart Veteran
IrishHeart
Posted

I was going to ask about the source of the vit E in the multi but I guess if they say gluten free... then that shouldn't be an issue.

Vit E "mixed tocopherols" are often derived from SOYBEAN OIL, so it needs to state they are SOY -free for me as well.

IrishHeart Veteran
IrishHeart
Posted

I've had problems with vitamins. Especially the multi-vitamins. I have tried various brands that are supposed to be GFCFSF but none has ever worked for me. I have some of the Pioneer multi-vit too, but don't take them anymore. What I do take is calcium, D and zinc pills. And a B-12 pill sometimes, or a B-complex. I don't take any vitamin pills every day. And the ones I take are not grandiose fix everything pills with everything but the kitchen sink in them. Those kind always cause me problems. I suspect the retinal palmitate (vit-A) in the Pioneer multi-vits is a problem but that is just a think on my part. It doesn't really matter since I get sick if I take them, so I don't take them. When I have done elimination diets in the past that is always one of the first things I have eliminated, vitamin pills. When I went off soy completely it took a couple weeks to start feeling better, and a month and a half to really feel pretty ok. Some of these things can take some time.

that's interesting!...what do you think is the problem with Vitamin A for you? just makes you feel ill? I am just curious as I too have to be cautious with what I take...and I researched Pioneer brand to make sure it was okay for me. You've got me thinking now.... :unsure:

IrishHeart Veteran
IrishHeart
Posted

I don't have any sage advice other than this general statement - most people take too many vitamins. Based on doctor and nutritionist advice I take only vitamin E, C, calcium, D, and iron complex - that is it. Both my doctor and my nutritionist advised me only to take those supplements that my blood tests show I need and both stated that many people take too many unneeded vitamins.

I agree completely!!!

I only take the ones I need too, based on what's deficient in me (Folic acid (B9), D-3, cal/ mag-for osteopenia, and an anti-oxidant formula for E,C and A)

I took so many supplements during the last 3 years, on advice from others, and think it made me feel WORSE! My gut wasn't absorbing anything anyway.

I might as well have lit that money on fire for all the good they did. :blink:

In the end, a healed gut will solve most vitamin deficiencies anyway. :)

Marilyn R Community Regular
Marilyn R
Posted

I've tried a number of calcium supplements. My doctors kept telling me that calcium couldn't make me sick! :P But they did!

I've been doing fine with Citracal with D, even though this is the (cover their rear-end) response they sent me when I inquired about gluten-free/SF/DF status:

"Thank you for taking the time to contact Bayer HealthCare. We appreciate your

interest in Citracal.

We do not add any gluten to our products. However, we cannot guarantee that our

products are 100% gluten-free as this product is produced in a facility that

manufactures and/or packages other items which may contain gluten.

Milk/Dairy is not used in our formula. Furthermore, our ingredient suppliers

have confirmed that none of the ingredients produced for use in this formula are

derived from milk/dairy.

Regarding Soy, our Bone Density Builder formula contains Genistein, which is

naturally derived from soy. It is synthetically made in this formula, so it is

not called out as an allergen on the label. If you have an allergy to Soy,

please speak with your physician prior to taking the Bone Density Builder

formula.

The phytosterols in the Heart Health formula are derived from highly refined

soybean oil, which does not contain the soy protein that is allergenic. As

such, it is not called out as an allergen on the label.

Soybean is not used in our other formulas. Furthermore, our ingredient suppliers

have confirmed that none of the ingredients produced for use in these formulas

are derived from soybean. The Vitamin D3 does contain highly refined soybean

oil, which FDA does not require to be labeled as an allergen under FALCPA. (Food

Allergen Labeling and Consumer Protection Act).

Comments such as your own help us meet the growing needs of our consumers. I

certainly will share them with our Regulatory, Medical and Marketing departments

for consideration.

In appreciation of your interest, we will be sending you a coupon booklet via

U.S. Mail. You can expect to receive your coupons in the next 7-10 business

days. If I may be of further assistance, please feel free to contact me."

I find the statements about highly refined soybean oil interesting. A dietician friend of mine showed me an article that all commercially available Orange Juice contains soy, but since it is used with standard mfg procedures and is highly refined, it doesn't need to be listed as an allergin on the label.

IrishHeart Veteran
IrishHeart
Posted

I find the statements about highly refined soybean oil interesting. A dietician friend of mine showed me an article that all commercially available Orange Juice contains soy, but since it is used with standard mfg procedures and is highly refined, it doesn't need to be listed as an allergin on the label.

Really...I'd like to see that article...what the heck is soybean oil doing in OJ??!! :blink:

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hi everyone,

I really hope someone help me figure this out. I've been gluten free for about a year and a half now. I was wondering if anyone else had reactions to vitamins that are supposed to be gluten free? To make a long story short, I just had a larparoscopy done for enlarged lymph nodes in my stomach a month ago and I really think it was all because of the vitamins I was taking. I also had dizziness, headaches, fatigue, stomach tenderness, lost weight, night sweats and low grade fevers daily. My symptoms started in Feb and continued for two months. The doctors had to rule out lymphoma and performed a lymph node biopsy. Luckily the path report came back reactive lymph node. So they sent me to a rheumatologist to check me for other autoimmune diseases since they supected that it was an autoimmune reaction. All the tests came back negative. I was always studying my food journal to look for any patterns that might point to my symptoms being a gluten issues but I really didn't see any until I noticed that on the days that I didn't take two of my vitamins, I didn't have a fever that day. And it was always at night that I got the fevers and I always take my vitamins in the evening.

I stopped all my vitamins a little over two weeks ago and I'm starting to feel so much better. The fevers and night sweats stopped the day after I stopped taking them and I'm slowly starting to get my energy back. And I'm not losing weight anymore. (Also, I didn't change anything else with my diet, I don't eat out much if at all and I always had a gluten free kitchen)

Here's what I was taking:

1.Slow Fe Iron-I started this on back up and so far I haven't had any reactions to them and I really need iron.

I really suspect it was one or two of these but I'm really too afraid to try them again to find out:

2.GNC vitamins Utra Womens Multi vitamins - I just started these in Jan so I really suspect one of these.

3.GNC fish oil triple strength

4. Vitafusion Gummy Vitamins Calcium 500 - I was taking these for the last ten months with no problems, but I noticed they did change their labeling and product in the last three months and these two bottles were the newer venison. I also seen a strong pattern with this brand so I really don't want to start these up again at all.

5. Vitafusion Gummy Vitamins C 250

I did just call the Vitafusion company to see if there were any changes made to the product, but they told me no, but I think the rep. herself really didn't know that information. Blah-Blah-Blah... They are going to send me a refund and I have to mail them the vitamins to them so they can check them.

I am really wondering if maybe I am just too sensitive to take vitamins even if they do say gluten free. I've tried others- Country Life, Megafoods, Members Mark, Giant Eagle Brand, and now GNC, Vitafusion and I always end up having reactions to them. These last three months were the worst. I'm really ready to give up on all vitamins but I do have ostopenia, anemia, vitamin D deficiency, so I really need to take iron, calcium and vitamin D.

Does anyone have any ideas or suggestions? Has anyone had similar problems with vitamins? I just feel like I'm the only one...

Thanks everyone!

Soy affects my thyroid and gives me some of the symptoms you listed (unexplained fever, fatigue, etc). I was going to ask if you had your thyroid checked but then I saw that your signature said you had it taken out. Is it possible that these vitamins are interacting with whatever you are taking for your thyroid hormone replacement? You can check possible drug interactions (including vitamin and drug interactions) on drugs.com

SoyBoy Rookie
SoyBoy
Posted

I react to GNC products and all fish oils I have tried as well.

I now avoid any supplement with tocopherols (or lecithin of course).

GFinDC Veteran
GFinDC
Posted

that's interesting!...what do you think is the problem with Vitamin A for you? just makes you feel ill? I am just curious as I too have to be cautious with what I take...and I researched Pioneer brand to make sure it was okay for me. You've got me thinking now.... :unsure:

I am not really sure IH, just guessing. I get some digestive upset with their multi-vits. It is not gluten, it's a different reaction. The vitamin A has a bad rep for causing skin cancer, so I don't think it is good to take it internally. But that may not be what bothers me in them. They are like most multi-vits IMHO, too many ingredients to isolate the problem. That is why I don't take those kinds of pills anymore.

IrishHeart Veteran
IrishHeart
Posted

I am not really sure IH, just guessing. I get some digestive upset with their multi-vits. It is not gluten, it's a different reaction. The vitamin A has a bad rep for causing skin cancer, so I don't think it is good to take it internally. But that may not be what bothers me in them. They are like most multi-vits IMHO, too many ingredients to isolate the problem. That is why I don't take those kinds of pills anymore.

I agree---the more ingredients, the more trouble, I find! :huh:

T.H. Community Regular
T.H.
Posted

One thing that helped me eliminate many vitamins as a possibility was to change what I said when I called them. I used to just ask if they were gluten free. Now, I ask if they are gluten free, and then I ask if they test for gluten levels, and whether they test every batch, or periodically.

About a third of the time I asked questions in this manner, I got a spiel about how they don't have to test because they KNOW their product is gluten free: they don't add any gluten ingredients.

That means it's gluten free, right? :rolleyes: Jeesh. Ever heard of gluten cc, Mr. vitamin company?

That's kind of like my saying my house is dust free because I don't add any dust to it. :D

IrishHeart Veteran
IrishHeart
Posted

That's kind of like my saying my house is dust free because I don't add any dust to it. :D

Good one! :D :D

Marilyn R Community Regular
Marilyn R
Posted

Good one! :D :D

Sorry, Irish, I'm not going to be able to come up with a link for that article. It was written by a registered dietician, posted on a RD website. I had one copy of the article (which was printed by my friend) and gave it to another friend that has Graves Disease. That was a couple of months ago. The letter from Bayer reminded me about that article.

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      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      Anti-endomysial Antibody (EMA) Testing

      By Scott Adams · Posted

      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
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