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The Pieces Dont Fit- Help!
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i'm 23 years old. ive been to 5 different doctors and no one can figure out whats going on. here are my symptoms

-high ANA

-joint pain throughout my entire body

-hair loss

-inconstant stool

-one hand cold while the other is warm

-in and out of anemia for quite some time

-extremely low iron stores

-low b12

-foggy mind

ive tested negative for

-lupis

-rheumatoid arthritis

-sjogrens

ive taken multiple xrays all which have some back normal, and my foot got so swollen last weekend that i could not walk for 3 days. they did test for celiacs and it came back negative. however, ive done SO much of my own research, and ive found that those symptoms are common for people with a gluten intolerance. ive also found and heard that 7/10 times the test is a false negative?? im honestly so confused and in so much pain. i feel miserable. if anyone has any insight i'd really appreciate it.

Edited by kvtlove
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Hi,

Did the doctor test you for NCGI? I'll give you the answer, no. Why? Because it hasn't been acknowledged by the medical community long enough for them to figure out a test for it. That doesn't mean people aren't walking around with NCGI every day though, and being told by their doctors that they don't have a problem. So, the thing to do is test yourself. Go on the gluten-free diet for 6 months and see if it helps. While you are at it, drop all diary and soy and nightshades, which can also cause problems. The gluten-free diet is the only treatment for celiac disease and NCGI anyway.

The other test you could do is to ask your GI for an endoscopy with biopsies for celiac testing. The endoscopy can tell you if you have celiac, but not NCGI at the moment.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

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i'm 23 years old. ive been to 5 different doctors and no one can figure out whats going on. here are my symptoms

-high ANA

-joint pain throughout my entire body

-hair loss

-inconstant stool

-one hand cold while the other is warm

-in and out of anemia for quite some time

-extremely low iron stores

-low b12

-foggy mind

ive tested negative for

-lupis

-rheumatoid arthritis

-sjogrens

ive taken multiple xrays all which have some back normal, and my foot got so swollen last weekend that i could not walk for 3 days. they did test for celiacs and it came back negative. however, ive done SO much of my own research, and ive found that those symptoms are common for people with a gluten intolerance. ive also found and heard that 7/10 times the test is a false negative?? im honestly so confused and in so much pain. i feel miserable. if anyone has any insight i'd really appreciate it.

Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --
THIS IS IMPORTANT
- it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.

It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!

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Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --
THIS IS IMPORTANT
- it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.

It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!

WOW thank you for that information!! i do have all my results. heres the info i have:

-TTG antibody, IGA

-IGA

-HLA-DQ2, A1, DQB1

-immunoglobulin A

-thyroid peroxidase antibodes

all of the above came back negative/normal. my vitamin D has not been tested. from what i see on the report thats all the tested and based on the things you listed, it wasnt enough. even with my thyroid, it looks like it was just the "general" test. no TSH, Free T4, Free T3.

i have a full body bone scan this week. ive decided to start the gluten free diet regardless. im only on my second day so its much too early to tell anything, but im committed to it 100%. it would be comforting to see something on paper validating everything. this is all so exhausting!!

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Hi,

Did the doctor test you for NCGI? I'll give you the answer, no. Why? Because it hasn't been acknowledged by the medical community long enough for them to figure out a test for it. That doesn't mean people aren't walking around with NCGI every day though, and being told by their doctors that they don't have a problem. So, the thing to do is test yourself. Go on the gluten-free diet for 6 months and see if it helps. While you are at it, drop all diary and soy and nightshades, which can also cause problems. The gluten-free diet is the only treatment for celiac disease and NCGI anyway.

The other test you could do is to ask your GI for an endoscopy with biopsies for celiac testing. The endoscopy can tell you if you have celiac, but not NCGI at the moment.

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Could you please explain what nightshades are? I've been wondering this for a while. Thanks.

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I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.

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I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.

what is it about them that causes the issue? i noticed i am ok with bell peppers. but potatoes mess me up. i think eggplant does too. i haven't payed much attention yet to how i react to chili peppers or paprika. i think tomatos are starting to bother me too. the night i broke out in hives, i had pizza, a couple beers, and some cherry tomatos from my friends garden. perfect mixture for a hive breakout i guess. funny thing is they started out on my stomach. it was as if my belly was on fire and felt toxic from the inside out and the hives were just a way of sending that message as well. it took me months to figure out what was happening as i did not understand if the bloating, hives, fatigue could all be food intolerance. of course dr's were clueless.

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Yes, the nightshades give me hives, too. They also promote inflammation within the body. Don't ask me the biochemistry of it because I flunked chemistry in school :D

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I would seriously think about doing an elimination diet (look for one that is pretty strict). Make sure you keep a journal to document everything! Make sure you are strict with inflammation causing foods - gluten, dairy, sugar, nightshades, alcohol, caffeine. It is so much work but it is so worth it! BTW, solanines (which have fungicidal and pesticidal properties) are what aren't your friend in nightshades. There is so much to learn about our food and bodies and then on top of that there is more:(. Two years later (for me) and I am finally getting it....I think/hope.

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The nightshades have alkaloid type chemicals in them. Alkaloids are also used in some medicines. Tobacco is a nightshade. Potatoes, peppers, eggplant, tomatoes are the food nightshades.

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BTW, solanines (which have fungicidal and pesticidal properties) are what aren't your friend in nightshades. There is so much to learn about our food and bodies and then on top of that there is more:(.

Ah yes, the solanines, that rings a bell. I have problems with all the defense mechanisms of plants - solanines, lectins, everything they throw up to keep the bugs out.

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I avoid all nightshades (think 'deadly' nightshade :) ) which are plants that grow at night. Potatoes, tomatoes, eggplant, bell and chili peppers, paprika, nicotinia.

You're missing one: tomatillos :)

Here's more on the family in general http://en.wikipedia.org/wiki/Solanaceae

I'm allergic to tomatos so i limit my intake on potatos and the like for just because reasons.

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I would seriously think about doing an elimination diet (look for one that is pretty strict). Make sure you keep a journal to document everything! Make sure you are strict with inflammation causing foods - gluten, dairy, sugar, nightshades, alcohol, caffeine. It is so much work but it is so worth it! BTW, solanines (which have fungicidal and pesticidal properties) are what aren't your friend in nightshades. There is so much to learn about our food and bodies and then on top of that there is more:(. Two years later (for me) and I am finally getting it....I think/hope.

right now im going gluten free. as for dairy, i think ill hold off on that for now. i honestly dont eat too much dairy except for greek yogurt and cheese (very occasionally), so i dont think its something prominent enough in my diet to be causing all these problems. foods with gluten, however, were very prominent so im starting there. thank you SO much for your insight

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"so i dont think its something prominent enough in my diet to be causing all these problems."

Please don't dismiss it though. If it is gluten you could have created enough damage that it made other foods a problem. Or maybe other foods were a problem all along? Who know, I don't think anyone does. My symptoms prediet.

-very thin, weak, fine hair

-psoriasis

-Psoriatic Arthritis (every joint affected)

-possible Ankylosing Spondylitis

-Reynauds Syndrome

-Sgorgens

-Mortens Neuroma

-very thin dental enamel and gingivitis

-cold hands, purple knuckles

-chronic UTI's

-jaundice

-chronic inflamed lymph nodes

-anemia

-poor circulation/very low blood pressure

I am gluten free but because I did overindulge in nightshades and too many carbs in the past month I am getting a couple of spots, have swollen knuckles and I am feeling a bit of pain in my large joints and upper neck.

I know everyone is different but I wouldn't dismiss an elimination diet for just 10 days. It may be too hard to think about right now but in the future if things get bad, it's worth it to consider - just to see. I am very impressed with the power diet holds on my body. My younger sister has some autoimmune conditions too and she also is able to control her conditions. My older sister takes medication for her and they come back as soon as she stops them. I did medications too. I have been on medication since I was 13. It never helped (for long). I am so happy I started to react to them and started an alternative route. So glad for this board too as I see so many others have been helped by modifying their diet alone. It keeps me inspired and makes me feel like I am not crazy, lol. Good luck and I hope you get things figured out. BTW, all the conditions I listed - full remission! A coincidence according to my GP and Rheumatologist. I wish they were interested in tracking because when I cheat (over a period of 2-3 weeks) everything slowly comes back.

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Good luck with the gluten-free diet. Be sure to give it a few months; I'm still noticing improvements after 6 months, and things like my migraines took a few weeks to go away.

I would like to encourage you to get the full thyroid testing done too. Your symptoms scream hypothyroid.

I am hypothyroid, but my TPO Ab was "normal"... it was 33.8 and the range was 0-34. LOL It is fairly common for TPO Ab to fluctuate, and to drop off a bunch once the thyroid is almost, well... dead. Don't trust a "normal test" statement without seeing your actual results and consulting sources other than your doctor's "say-so".

Consider testing:

TSH (should be close to a 1)

Free T4 and Free T3 (should be at 50-75% of the normal reference range)

TPO Ab (should be almost non-existant)

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thank you every body!! im getting more help on here than i have with any of the doctors i've recently seen. truly appreciate it :]]

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thank you every body!! im getting more help on here than i have with any of the doctors i've recently seen. truly appreciate it :]]

We know how it feels :)

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Do you know what specific tests the doctors have done? Please get a copy of all your lab results and find out what they did. You do have a right to this information from your doctor.

When you get those, you can get a lot of specific help if you post the results here (both results and lab ranges). Sometimes docs say they test for celiac, but they don't do ALL the tests. They should have done these:

Deamidated gliadin peptides Igg

Deamidated gliadin peptides IgA

Anti-tissue transglutaminase IgG

Anti-tissue transglutaminase IgA

Anti-Endomysial antibodies (anti-EMA) - there IS an IgG version available, but it is almost never done except by request

TOTAL SERUM IgA --
THIS IS IMPORTANT
- it is common to be deficient in IgA antibodies and if you are, NONE of the IgA tests are valid, you HAVE to have the IgG versions of tests.

It is okay to ask for ALL of them...some docs follow a "cascade" method of testing...they test the most likely component first, if that is negative they don't test further. The problem with that is, some people test positive on ony ONE of the many tests, and it's the one they would have done LAST. This contributes to the reasons that it takes people an average of 11 years (well, that's the last figure I remember!) to get diagnosed! You don't want to let them keep you sick that long!

You also should get your thyroid antibodies tested, both anti-thyroid peroxicase (anti-TPO) and anti-thyroglobulin (TgAb) antibodies. Plus, they should check your TSH, your Free T4 AND your Free T3.

The fact that you have an elevated ANA means you have autoimmune activity going on in your body. Your low B12, your anemia, low iron (I assume that was a serum ferritin test), your hair loss, would be very common in both thyroid and celiac. Have they checked your vitamin D levels?

Ruling out rheumatoid arthritis and lupus are biggies, the next common and obvious choices would be celiac and thyroid. I repeat...your ANA shows you are autoimmune...your body is attacking itself. You are suffering inflammation which is damaging to you. As GFinDC said, you could try and get them to do an endoscopy, but they aren't likely to do it in the absence of positive bloodwork.

GfinDC also suggested trying the gluten free diet. I second that! You do not need a prescription of a diagnosis to give it a good go of several months, but you DO need to be FASTIDIOUS about it! If you improve, you have your answer. And you would be well within your rights to call yourself celiac even in the absence of diagnosis. Lots of people here on the forum have had to do that.

Best to you!

i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

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In addition to trying gluten free, I'd find out about CRPS/RSD as well because of the swelling and the temp changes from one side of your body to the other. Being anemic though can cause all these symptoms as well except for the swelling. Either way, going gluten free can help in my opinion.

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In addition to trying gluten free, I'd find out about CRPS/RSD as well because of the swelling and the temp changes from one side of your body to the other. Being anemic though can cause all these symptoms as well except for the swelling. Either way, going gluten free can help in my opinion.

thank you for that suggestion!! after looking into it though i dont think CRPS/RSD fit my symptoms. my guess is the same as yours when it comes to the temp changes with anemia. ive been gluten-free for about 2 weeks now and the only thing that has really improved is my digestion. my stool is more solid now (used to have craZy diarrhea nearly every time i ate). thats a pretty good improvement, right??

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i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

I assume you've talked about these labs with a doctor??

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i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

what is the number on the TSH? saying normal is not good enough.
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i got more testing done including the ones suggested here. these are the results:

thyroglobulin antibodies <20 (normal)

thyroglobulin 36.6 ng/ml (abnormal, range 2.0-35.0)

TSH (normal)

T4, free (normal)

T3, Total 75 ng/dl (abnormal, range 76-181

vitamin D, Total 26 (abnormal, range 30-100)

I AM SO CONFUSED!!!!!!!!

Would you be able to post the values of your test results, not just whether they were "normal"?

I am curious as to why your doctor checked your thyroglobulin...that is generally done when looking at hyperthyroid people. The total T3 value isn't much use either, you need to know what your FREE T3 level is...the unbound hormone is the only one your cells can use. Though, if your TOTAL is low, it is guaranteed your FREE is low as well since the free hormone is only a fraction of the total.

You might beg for an entirely new set of thyroid labs, which should include:

Free T3

Free T4

Anti-Thyroid Peroxidase Antibodies (anti-TPO)

TSH

REVERSE T3

So...I'd say you better be getting with a good doc (and not necessarily and endocrinologist) to discuss this stuff, because on the surface of everything your thyroid isn't serving you well even if your T4 looks normal. The actual levels would help with better understanding. It would appear that you might not be converting your T4 to T3.

That is how thyroid function works...the pituitary stimulates the thyroid with TSH (thyroid stimulating hormone). The thyroid should respond by making thyroid hormone, the bulk of it in the form of T4. As the body needs it, the T4 is converted to T3, some bound to carrier proteins (thyroglobulin) and some not. The cells have receptors that recognize the hormone, and pick up as much of the FREE T3 as they need in order to carry out their metabolic functions.

With low T3, you are functionally hypothyroid and WILL have thyroid symptoms. But you will need a lot of tenacity and good luck to get a doc to look beyond your TSH and T4. Thyroid is VERY badly treated by most mainstream medical professionals.

Also, though your T3 and thyroglobulin levels are off, it doesn't necessarily mean the thyroid itself is failing...it could also be pituitary. I don't want to scare you because your elevation is so slight, but increased thyroglobulin can be an indicator of a thyroid cancer though if there is a disease going on, it would still more likely be Hashi's/Graves or other form of thyroiditis. You can poke around labtestsonline.org to read about individual tests.

Is it acceptable to post links to other sites? The thyroid forums at about.com and at Delphi.com start have some wonderful, friendly people who have lots of experience and can offer plenty of support and guidance. There are some thyroid-savvy people here too, just don't know if they'll find their way to this topic!

Bottom line, you have symptoms that are explainable by even this sketchy lab report and you need someone who can better investigate this for you.

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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