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Gluten Is Still Sneaking In On Me

Roda

By Roda
in Coping with Celiac Disease

Recommended Posts

Roda Rising Star
Roda
Posted

Well, I think I have found a reason for the slightly elevated RF I had in June..this is just my theory anyway. I don't think I am gluten free enough! :angry: Here is why...I think is elevated because gluten is still sneaking into my diet somewhere. I don't have any symptoms of RA so I believe it is the celiac causing it to be elevated.

Symptoms:

-fatigue since around March that is getting worse

-increased cold intolerence and worsening of the raynaud's symptoms.

-weight gain and inability to loose weight

OK thought it was all related to thyroid, despite good thyroid tests. My endocrinologist did agree last week to increase my cytomel dosage from 10 mcg to 25 mcg based on my symptoms in addition to the 112 mcg of levothyroxine. I have been feeling a little tachy and think it is way to much...recieved my results from last week and my labs are excellent. I am going to place a call and get my cytomel lowered again. However, I'm not ruling out that the thyroid is getting screwed more from all of this either.

Here is what I discovered looking at all my labs since March of this year. I only listed the refrence range once since they are the same for the first ones listed. The ones I bolded are the ones I am concerned with. While "in range" they are dropping. I'm afraid if I do nothing that I will be worse off in another few months. This really explains my fatigue!! I keep getting told everything is stable when in fact if you look, they are declining. Not good. I have had some minor stomach issues lately with mild occasional reflux, the RUQ pulling sensation, soft pale stools and some statorrhea. I have been trying to watch the fat intake and when I have issues take my creon. I really thought I was doing well since I eliminated a lot of gluten free stuff last August so I was not thinking the celiac and was again side tracked by the gallbladder. Obvious to me now, I'm malabsorbing to some degree(not as bad as last year). This very well could explain why, despite taking prescription vitamin D 50,000 iu's weekly since Jan. 2009, that my vitamin D has not gone much higher than what it is too. My original ferritin before diagnosis was 4 and vit D 6 months after gluten free was 17 so I don't want this to get that bad again. I don't think it is an overt glutening, but rather small amounts in the products I do use building up over time. It makes it harder to pin point. I'm really getting discouraged. I don't think it is a CC issue in the home since three out of four of us are gluten free. Hubby is extremely careful. Here is to my last day eating anything but the basics. Most dairy is going bye bye for a little bit too. I also need to get my celiac labs redone. I don't want to go back to the GI because he is going to tell me he wants to put me on steroids. I DON'T WANT TO! I really think it is a matter of just going back to basics and not reintroduce any processed anything with maybe the exceptin of the Ener G brand stuff for me after some time. Heck, if that doen't work, then maybe I'll look at grain free, but don't want to go that extreme yet. I have a follow up appointment in Feb. with my PCP on the rheumatoid factor and will ask for everything else to be drawn then too. I also got to thinking, if I'm this sensitive, then what is it doing to my kids. It breaks my heart to think, especially the youngest one who is celiac, that I could be doing him harm unintentionally too. I'm just feeling really low today and needed some support. Hubby is trying to be sympathetic, but he is lying in bed sick as a dog for the third time in 1 1/2 monts. That's not normal for him at all.

March:

free T4 = 1.0 ref range 0.58-1.64

free T3 = 4.43 ref range 2.08-3.90

ferritin = 43 ref range 11-336

vit B12 = 400 ref range 180-914

vit d =47.4 ref range 32-100

June:

free T4 = 0.84

free T3 = 3.91

TSH = 1.31 ref range 0.30-3.04

ferritin = 47

vit B12 310

vit D = 52.9

iron = 59 ref range 28-170

transferrin 249 ref range 192-282

TBIC = 348 ref range 280-400

% Sat = 16.9 ref range 20-50

Sept:

free T4 = 0.87

free T3 = 4.19

TSH = 0.31

ferritin = 26

vit b12 = 304

vit D = 43.3

iron = 38

trans ferrin = 255.9

TBIC = 358.3

% sat = 10.6

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T.H. Community Regular
T.H.
Posted

*Big Virtual Hug*

So sorry you're feeling so crummy! I hope it turns out to be some little, oddball thing that's cc'd and that most of your diet is actually still wonderful and gluten-free enough for you. If not...well, I have some wonderful (okay, actually, kinda lame) recipes I can pass along. ;)

I do have some recipes to pass on from OTHER people that are actually good, though. :lol:

If you are looking for recipes that use a lot of fruits and veggies and not so much gluten processed foods? This site has some nice recipes.

Open Original Shared Link

They're not all gluten free, but she has a nice section in her recipe archives called 'basic techniques' that have some nice additions to our recipes that are really gluten free. How to make our own celery salt, for example. She even has a great homemade bouillon:

Open Original Shared Link

And she has something called potato croutons, too, that are awesome. :-)

Open Original Shared Link

Roda Rising Star
Roda
Posted
  • Author

Thanks Shauna! I needed that. I'm beginning to think I may be falling into the super sensitive category, well maybe not super sensitive, but more than a lot of people. I do make a lot, if not most of our meals from scratch anyway. I'm just gonna start back from the beginning and see how it goes.. meats, veggies, fruits, eggs, that sort of thing. I wonder if I should start taking some iron supplements again? Probably wouldn't hurt.

dilettantesteph Collaborator
dilettantesteph
Posted

In our household, it seemed that no matter how careful the gluten eaters were, were still got cc'ed. We are extremely sensitive however. Maybe it isn't a problem for you. Do you wash dishes in the dishwasher together? I know that I sometimes find bits of food left over on dishes in the dishwasher. I would think that if I can see some, that there might be other food bits that I don't see. I don't think that this is an issue unless you are sensitive to very low levels. I'm guessing that might have been our problem.

Roda Rising Star
Roda
Posted
  • Author

There is no way the husband is going to give up his sandwiches for lunch. As far as the food prep is concerned he does really well with it and in the kitchen. Everyone knows to avoid the one drawer in the fridge and the small section of counter that is his. He isn't as careful with the computer for example. The key board is CC'd so it has become automatic to wash after typing. I've tried to discuss this with him before to no avail. So maybe there still is romm for improvement there and outside of the kitchen. However, I think most of it is ingestion, but just don't know what yet. That's why I will eliminate everything I can. Last time I saw a dramatic improvement over three months time.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

Hubby is trying to be sympathetic, but he is lying in bed sick as a dog for the third time in 1 1/2 monts. That's not normal for him at all.

[

This is just a random thought, but if the majority of your meals are gluten-free, then your husband is on a low gluten diet, correct? Is it possible that he is actually a little gluten sensitive as well and that occasional sandwich is making him get sick more often? Would he agree to a trial period of making the house gluten-free for a month to see how you do? If you see major improvements then you have your answer. If he really needs to have sandwiches he can buy them when out of the house. Or if money is an issue can he buy a loaf a bread, take it to work and make his sandwiches there? If they have a kitchen or break room it would proabbly be fine for him to keep his loaf of bread there. Otherwise he could keep it at his desk. I know you don't want to make him "give up" his gluten foods but it seems to me that since there are 3 of you eating gluten-free it would be safer and easier to have a gluten-free house. He can still eat gluten outside of the house if he doesn't think it's making him sick.

Roda Rising Star
Roda
Posted
  • Author

All of our meals together are gluten free. Breakfast and lunch are the only time he eats gluten at home in the form of cereal and sandwiches. I've jokingly said to him I thought he might be gluten sensitive since my oldest son went gluten free. Yes his gluten consumption is a lot less at home even more. He used to like beer and have a couple here and there years ago. He doesn't even drink beer anymore because he doesn't have the desire and because of some of his meds. He decided to have one with my dad when we were in Fl. in Jan. He ended up getting bad D and we couldn't think of any reason for it. We settled on that one beer did it to him which was weird. He also has some reflux issues, however he was heavily dependent on ibuprophen since 2006 till recently because of chronic pain from surgery complications. He has recently switched to celebrex once a day. He got a headache and took some ibuprophen and it really bothered his stomach. I belive he probably has/had an ulcer from it. I've mentioned to him that it is really unusual for him to be getting sick like this. He was never a sickly kid, so when we put our oldest in daycare at almost 3, everything my son got my husband got too. He had never gotten that stuff as a kid. So when the second came around and started day care, while the youngest got sick, hubby did not. He has had an occasional illness here and there since then, but not like this. June-we all got some kind of gi virus plus my youngest and I got glutened on top of it. Just in the last 1 1/2 mon. he has had two GI illneses and now an URI. When he gets an URI it is hard for him to shake it and I worry it will develop into pneumonia. He even is still smoking despite the horrible deep coughing/fits, so he is keeping it more irritated.

Now this is stupid. He works in a grocery store and they do not have a break room or an area for their employees to eat or fix a lunch. We live close to his work so he comes home for lunch everyday. They had a microwave and the higher ups took it away from them. They are doing good to have their coffee pot! So keeping things at work isn't an option for him. I don't think he is making me sick. When I went back to basics last year I got better. I have added some things back in since then and I think that is what is getting me. Just figuring out what it is will be the trick. Today I actually feel pretty good.

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frieze Community Regular
frieze
Posted

There is no way the husband is going to give up his sandwiches for lunch. As far as the food prep is concerned he does really well with it and in the kitchen. Everyone knows to avoid the one drawer in the fridge and the small section of counter that is his. He isn't as careful with the computer for example. The key board is CC'd so it has become automatic to wash after typing. I've tried to discuss this with him before to no avail. So maybe there still is romm for improvement there and outside of the kitchen. However, I think most of it is ingestion, but just don't know what yet. That's why I will eliminate everything I can. Last time I saw a dramatic improvement over three months time.

Open Original Shared Link

put it on when you want to use, take it off when you are finished.

Please don't bother with the little green football Vitamin D...just go to health food store and get D3.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

All of our meals together are gluten free. Breakfast and lunch are the only time he eats gluten at home in the form of cereal and sandwiches. I've jokingly said to him I thought he might be gluten sensitive since my oldest son went gluten free. Yes his gluten consumption is a lot less at home even more. He used to like beer and have a couple here and there years ago. He doesn't even drink beer anymore because he doesn't have the desire and because of some of his meds. He decided to have one with my dad when we were in Fl. in Jan. He ended up getting bad D and we couldn't think of any reason for it. We settled on that one beer did it to him which was weird. He also has some reflux issues, however he was heavily dependent on ibuprophen since 2006 till recently because of chronic pain from surgery complications. He has recently switched to celebrex once a day. He got a headache and took some ibuprophen and it really bothered his stomach. I belive he probably has/had an ulcer from it. I've mentioned to him that it is really unusual for him to be getting sick like this. He was never a sickly kid, so when we put our oldest in daycare at almost 3, everything my son got my husband got too. He had never gotten that stuff as a kid. So when the second came around and started day care, while the youngest got sick, hubby did not. He has had an occasional illness here and there since then, but not like this. June-we all got some kind of gi virus plus my youngest and I got glutened on top of it. Just in the last 1 1/2 mon. he has had two GI illneses and now an URI. When he gets an URI it is hard for him to shake it and I worry it will develop into pneumonia. He even is still smoking despite the horrible deep coughing/fits, so he is keeping it more irritated.

Now this is stupid. He works in a grocery store and they do not have a break room or an area for their employees to eat or fix a lunch. We live close to his work so he comes home for lunch everyday. They had a microwave and the higher ups took it away from them. They are doing good to have their coffee pot! So keeping things at work isn't an option for him. I don't think he is making me sick. When I went back to basics last year I got better. I have added some things back in since then and I think that is what is getting me. Just figuring out what it is will be the trick. Today I actually feel pretty good.

If he IS sensitive to gluten, the fact that he smokes is probably keeping him from having symptoms on a daily basis. I forget what the connection is, but many people on this board have reported their gluten intolerance symptoms got worse once they quit smoking. In the beginning my husband kept eating gluteny whole grain cereals and oatmeal because he has high cholesterol and I thought it wans't a risk to me, but I kept getting sick. Most likely it was from him kissing me. We found we had to keep a gluten-free home for me to not be sick all the time. I hope you can figure out what's getting you and feel better soon.

Roda Rising Star
Roda
Posted
  • Author

If he IS sensitive to gluten, the fact that he smokes is probably keeping him from having symptoms on a daily basis. I forget what the connection is, but many people on this board have reported their gluten intolerance symptoms got worse once they quit smoking. In the beginning my husband kept eating gluteny whole grain cereals and oatmeal because he has high cholesterol and I thought it wans't a risk to me, but I kept getting sick. Most likely it was from him kissing me. We found we had to keep a gluten-free home for me to not be sick all the time. I hope you can figure out what's getting you and feel better soon.

I've already got some ideas on what to eliminate. Time will tell.

Roda Rising Star
Roda
Posted
  • Author

I think I may be onto something. I realized I had become quite obcessed with tortilla chips and salsa over the last few months. Not just a few here and there(which do not give me any trouble) but going through bags like they were going out of style. Since elimininating that, I have not had any issues. The brands I had been eating: Tostitos- gluten free lable, On The Border-gluten free lable or Santitas-not gluten free lable. The salsa is Triggers. I never did call since all the ingredients were straight forward. It doesn't rule out cc in it though. I'm putting my money on the chips, but not sure which one or all.

dilettantesteph Collaborator
dilettantesteph
Posted

Yeah! Glad you figured it out. We have continuous ups and downs, but by trial and error we will get this thing! My life seems like one continuous elimination diet sometimes.

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I think I may be onto something. I realized I had become quite obcessed with tortilla chips and salsa over the last few months. Not just a few here and there(which do not give me any trouble) but going through bags like they were going out of style. Since elimininating that, I have not had any issues. The brands I had been eating: Tostitos- gluten free lable, On The Border-gluten free lable or Santitas-not gluten free lable. The salsa is Triggers. I never did call since all the ingredients were straight forward. It doesn't rule out cc in it though. I'm putting my money on the chips, but not sure which one or all.

Sounds like you figured it out. If you do figure out a safe brand of tortilla chips you may also want to keep a bag for yourself and not share with the gluten-eating husband. It could be cc from the factory or it could be cc from your husband eating a sandwhich and then reaching in the bag for some chips. Just thought I would mention that in case you are sharing chips bags. You're doing a great job playing gluten detective. :)

GFreeMO Proficient
GFreeMO
Posted

Yeah! Glad you figured it out. We have continuous ups and downs, but by trial and error we will get this thing! My life seems like one continuous elimination diet sometimes.

Ditto!! :)

cougie23 Explorer
cougie23
Posted

Ditto!! :)

Or maybe you should say..."DORITO!!!"...LOL...couldn't resist that!

seriously though...just a thought here,...If "other" families on this site reported family members who were NOT celiac...that went GLUTEN free(because of a family member)

and became sensitive as well...and WE have even MORE problems with the stuff AFTER going gluten free....do you see where i'm taking this? Maybe his allmost gluten free diet is making him more sensitive to what little he DOES eat! Just a thought!? :unsure::rolleyes:

Maybe thats partily why he's been so sick latly. But he really needs the bacterial levels checked in his gut! this could be a few things!My husband has some serious Stomache/gut issues...(we know whats wrong..but I don't want to get into that)....He Lives on Vanilla yoplait...Literaly...it keeps the bad bacteria down and coats his stomache! have your hubby eat a few spoonfulls WITH each meal...Especialy anything spicy

/oily/ or questionable to digest!! :)

Roda Rising Star
Roda
Posted
  • Author

I'm going to guess CC from the factory. Hubby is really good when it comes to the food. Other than not eating them he and I have not done anything different. I'm hoping it isn't all the brands. My favorite is the On The Border and we like to crush them up, mix them with taco seasoning, coat chicken strips with them, and bake them in the oven with butter drizzled over them. Everyone has been wanting these, but I have been very hesitant.

Gemini Experienced
Gemini
Posted

Well, I think I have found a reason for the slightly elevated RF I had in June..this is just my theory anyway. I don't think I am gluten free enough! :angry: Here is why...I think is elevated because gluten is still sneaking into my diet somewhere. I don't have any symptoms of RA so I believe it is the celiac causing it to be elevated.

Symptoms:

-fatigue since around March that is getting worse

-increased cold intolerence and worsening of the raynaud's symptoms.

-weight gain and inability to loose weight

OK thought it was all related to thyroid, despite good thyroid tests. My endocrinologist did agree last week to increase my cytomel dosage from 10 mcg to 25 mcg based on my symptoms in addition to the 112 mcg of levothyroxine. I have been feeling a little tachy and think it is way to much...recieved my results from last week and my labs are excellent. I am going to place a call and get my cytomel lowered again. However, I'm not ruling out that the thyroid is getting screwed more from all of this either.

Here is what I discovered looking at all my labs since March of this year. I only listed the refrence range once since they are the same for the first ones listed. The ones I bolded are the ones I am concerned with. While "in range" they are dropping. I'm afraid if I do nothing that I will be worse off in another few months. This really explains my fatigue!! I keep getting told everything is stable when in fact if you look, they are declining. Not good. I have had some minor stomach issues lately with mild occasional reflux, the RUQ pulling sensation, soft pale stools and some statorrhea. I have been trying to watch the fat intake and when I have issues take my creon. I really thought I was doing well since I eliminated a lot of gluten free stuff last August so I was not thinking the celiac and was again side tracked by the gallbladder. Obvious to me now, I'm malabsorbing to some degree(not as bad as last year). This very well could explain why, despite taking prescription vitamin D 50,000 iu's weekly since Jan. 2009, that my vitamin D has not gone much higher than what it is too. My original ferritin before diagnosis was 4 and vit D 6 months after gluten free was 17 so I don't want this to get that bad again. I don't think it is an overt glutening, but rather small amounts in the products I do use building up over time. It makes it harder to pin point. I'm really getting discouraged. I don't think it is a CC issue in the home since three out of four of us are gluten free. Hubby is extremely careful. Here is to my last day eating anything but the basics. Most dairy is going bye bye for a little bit too. I also need to get my celiac labs redone. I don't want to go back to the GI because he is going to tell me he wants to put me on steroids. I DON'T WANT TO! I really think it is a matter of just going back to basics and not reintroduce any processed anything with maybe the exceptin of the Ener G brand stuff for me after some time. Heck, if that doen't work, then maybe I'll look at grain free, but don't want to go that extreme yet. I have a follow up appointment in Feb. with my PCP on the rheumatoid factor and will ask for everything else to be drawn then too. I also got to thinking, if I'm this sensitive, then what is it doing to my kids. It breaks my heart to think, especially the youngest one who is celiac, that I could be doing him harm unintentionally too. I'm just feeling really low today and needed some support. Hubby is trying to be sympathetic, but he is lying in bed sick as a dog for the third time in 1 1/2 monts. That's not normal for him at all.

March:

free T4 = 1.0 ref range 0.58-1.64

free T3 = 4.43 ref range 2.08-3.90

ferritin = 43 ref range 11-336

vit B12 = 400 ref range 180-914

vit d =47.4 ref range 32-100

June:

free T4 = 0.84

free T3 = 3.91

TSH = 1.31 ref range 0.30-3.04

ferritin = 47

vit B12 310

vit D = 52.9

iron = 59 ref range 28-170

transferrin 249 ref range 192-282

TBIC = 348 ref range 280-400

% Sat = 16.9 ref range 20-50

Sept:

free T4 = 0.87

free T3 = 4.19

TSH = 0.31

ferritin = 26

vit b12 = 304

vit D = 43.3

iron = 38

trans ferrin = 255.9

TBIC = 358.3

% sat = 10.6

Roda...just so you know, RF can be elevated from just having multiple autoimmune diseases.

I have all 3 that you have, plus Sjogren's and my RF and ANA are still really elevated but I am totally asymptomatic for RA and any other problems which may be caused by these elevations. I am definitely not getting any gluten in my diet as my last labs were almost zero. When I went to a hematologist a couple of years ago, she told me that having multiple autoimmune issues like mine could keep these tests high. They are slowly coming down over time but are still quite high.

Considering that your GI was talking steroids, does he suspect refractory Celiac? Sometimes poeple have to go on short term steroids to get you over the hump as far as healing is concerned. Not something I would want to do either but sometimes that's what it takes. I have a co-worker who had to do just that because the damage to his intestinal tract was so bad at diagnosis. He is getting better. He also has other issues like we do as far as autoimmune problems and that was a factor in his treatment.

Roda Rising Star
Roda
Posted
  • Author

Roda...just so you know, RF can be elevated from just having multiple autoimmune diseases.

I have all 3 that you have, plus Sjogren's and my RF and ANA are still really elevated but I am totally asymptomatic for RA and any other problems which may be caused by these elevations. I am definitely not getting any gluten in my diet as my last labs were almost zero. When I went to a hematologist a couple of years ago, she told me that having multiple autoimmune issues like mine could keep these tests high. They are slowly coming down over time but are still quite high.

Considering that your GI was talking steroids, does he suspect refractory Celiac? Sometimes poeple have to go on short term steroids to get you over the hump as far as healing is concerned. Not something I would want to do either but sometimes that's what it takes. I have a co-worker who had to do just that because the damage to his intestinal tract was so bad at diagnosis. He is getting better. He also has other issues like we do as far as autoimmune problems and that was a factor in his treatment.

Last year he didn't use the term refractory, but said sometimes it can flare up and the steriods can help. Funny, since I have quit the salsa and tortilla chips I have been fine so far as symptoms go. I haven't had any steatorrhea which is a sign that I have been glutened. I'm not as worried as I was when I posted this originally about the RF. I think is because of the other AI diseases also now. I have no symptoms, my sed rate and ANA were both negative also. They want to repeat the tests in Feb. just to follow up and see what I am doing. No need to do anything unless other things go out of wack and I develop symptoms.

ravenwoodglass Mentor
ravenwoodglass
Posted

Funny, since I have quit the salsa and tortilla chips I have been fine so far as symptoms go.

Sounds like you found what the issue was. Glad your feeling better.

Gemini Experienced
Gemini
Posted

Last year he didn't use the term refractory, but said sometimes it can flare up and the steriods can help. Funny, since I have quit the salsa and tortilla chips I have been fine so far as symptoms go. I haven't had any steatorrhea which is a sign that I have been glutened. I'm not as worried as I was when I posted this originally about the RF. I think is because of the other AI diseases also now. I have no symptoms, my sed rate and ANA were both negative also. They want to repeat the tests in Feb. just to follow up and see what I am doing. No need to do anything unless other things go out of wack and I develop symptoms.

Tortilla chips are high in fat and that can cause the same symptoms as a gluten hit. I still cannot eat foods that are higher in fats without taking a digestive enzyme as I don't think my internal enzymes are in the same normal range as those without Celiac Disease. That's also normal for Celiacs....compromised digestive enzymes that never go back to normal.

Salsa would be naturally gluten free but then again, tomatoes can cause problems for many.

Yes, Celiac problems can flare up, especially for those of us with multiple AI issues. It does not mean you have ingested gluten. Stress and all those other issues with daily life can get us from time to time. Having so many AI issues can be quite challenging and annoying!

GFinDC Veteran
GFinDC
Posted

Sounds like you found the problem Roda. I think it would be worthwhile to look at all the ingredients in those chips and keep a list of them. It could be you are reacting to something other than gluten. Most chips are fried in soy oil, but not all. But it could be something else in them is getting you.

Roda Rising Star
Roda
Posted
  • Author

Stomach bothering me a little today, but I KNOW I didn't get any gluten. I did make fried potatoes for the boys two days in a row. Of course I ate them(they were so good) and feel like I still have a "fat" issue going on in the background. I'm not bloated up like I get when I get glutened. Eventually, I will get the gallbladder looked at again, but for now that's managable.

dilettantesteph Collaborator
dilettantesteph
Posted

What did you fry them in? If you are super sensitive, you might want to consider your oil.

UKGail Rookie
UKGail
Posted

Rhoda - sorry to see you have been struggling with cc or fat issues. You were kind enough to encourage me when I was miserable about fat digestion issues last week. As you suggested, digestive enzymes seem to work a treat with gas reducing by maybe 80 or 90% and I've been able to eat some salmon and a little non-dairy chocolate without suffering any further problems so far, so thank you for your help.

I looked into gallbladder problems and I am not convinced that it is linked to the fat issue. It seems more likely to be problems with its neighbour, the pancreas. I am not sure there is any proven link between pancreatitis and celiac, but if there is still inflammation/villi damage in the gut, then it seems possible that the pancreas might also be affected. Inflammation in the pancreas can also have an auto-immune basis. Treatment for mild pancreatitis is just to avoid alcohol, eat a low-fat diet and take digestive enzymes when needed. Autoimmune pancreatitis apparently responds well to steriod treatment. If you continue to have problems with this and you are sure it is not gluten cc, perhaps it is something to think about? I am going to mention it to doc at my follow up appt next week.

Roda Rising Star
Roda
Posted
  • Author

What did you fry them in? If you are super sensitive, you might want to consider your oil.

Canola oil. I've never thought to check for CC in oil. Something to consider.

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      6

      Son's legs shaking

      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...
    4. lizzie42
      - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

      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....
    5. Scott Adams
      - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

      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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    • knitty kitty
      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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