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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Nightshade Intolerance
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Wow, LUAP, the potato link is very interesting. When I got sick from touching peppers (was helping a friend who was making salsa - I washed the cutting board under hot soapy water, then wiped my face with my clean hand. My face started to burn from residual pepper juice which I didn't worry about. The next day I was sick with the major headache and stomach symptoms) I called a friend I had worked with at a biology software company, we made software for high school students to learn about biological processes. He said that there was something in peppers, etc, that was a neurotoxin and could conceivably spread through my blood stream and cause the reaction. I was really surprised by this and that was when I called an allergist, who said call a gastroenterologist. The gastro said call the allergist. So I called poison control instead and got a story somewhat like what you posed on that first link.

I think it has something to do with the liver not being able to break down the toxic qualities of the alkaloids in the nightshade family fast enough to not allow the body to have a reaction. If too much of this alkaloid will make anyone sick (as mentioned in that link) then if a standard amount makes some people as sick, there must be something to the metabolism of it. Since it does not appear to be an allergy - IE no typical allergic reaction symptoms, then it makes me believe it is a weakness in the liver.

The poison control center person I talked with said it is a toxic reaction - then he said he had a hard time believing that anyone could get sick from a potato. He said the skin of a green potato or the eyes is the worst, also leaves from the plant and green tomatoes. That surprised me because many people eat fried green potatoes.

I know that I have read the alkaloid starts to break down at temperatures over 450 degrees F, and have unscientifically justified my occasional french fry ingestion with that knowledge. Also, heat alone doesn't do it, must have hot oil involved, hence my french fry theory. I use to be able to eat as many as 10 fries, then I cut it to 5. I then found if I ate 5 fries two days in a row I would get sick - the half life for the alkaloid, or processing the nightshade food, is 36 hours. That would mean eating two days in a row is nearly like having that much in one setting. Before reading that I had found that if I skipped two days in between eating 5 fries, I was ok.

Yep, I am my best guinea pig. One of the times I got the sickest was when I went to a Chinese restaurant and had some soup. In the broth, surprisngly, were chunks of fresh tomato (didn't look like they'd cooked in very long). Instead of returning the soup, I thought if I pulled the chunks out, I would be ok. Within 2 hours of eating that soup I started getting sick, had to go home from work and was home two days. This was before I really realized to what extent this group of foods made me sick. That was when I started getting really careful.

Anyway, it would be great if I could find something that helped prevent this from happening, but honestly at this point, I almost never encounter these foods, or at least never really crave them. Probably lack some enzyme - something that doesn't show up on liver tests (mine always looks great on those metabolic panels).

Stephanie

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Hi, very intresting thread!

Im from Sweden and have found out that Im getting really sick from potatoes. Ive realized Im intolerant to "Nightshades". My doctor knows really nothing about this, so I have to figure this one out for myself.

Ive read alot and think Ive got a clear picture, its getting clearer anyhow. :)

But I still wonder if ordinary White- and blackpepper, the one you sprinkle on your food is a nightshade?

Do anyone have any good links for me about nightshade-intolerans!

whitepepper.jpg

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Hi everyone! New here, and surprised to find others who can't eat nightshades, though really it is no mystery that they would make folks sick, since they are poison. I had eliminated virutally everything from my diet and was still having intestinal problems; then hit on potatoes. I should've known since I have not been able to eat cooked tomatoes without throwing up since I was a kid (always sick after spaghetti and pizza).

It sure is hard getting gluten free waffles and the like, since many of them are made with potato starch.

As to the spice pepper, it comes from the Piper nigrum plant, and is a seed. It is not a nightshade. Black pepper is harvested when the seeds/berries are half ripe, then they are let to dry. Green pepper corns are picked early, and white peppercorns are picked when fully ripe, then soaked in brine to get off the shell and release the white pepper. Interestingly, pepper sends a message from the mouth to the tummy telling it to start churning up some juices because it's about to get food. It is an appetite stimulant in that way. It also, apparently, hides the lack of freshnes of food, and was therefore highly valued in the Middle Ages when food might be scarce now and again.

Tobacco, though, is a nightshade.

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Thanks for the info. Stephanie. I did read your past posts on this topic. It is just such a strange thing to have. I'm afraid that my doctor will think I am crazy if I mention it. I wonder how common this is and if there is any current research being done on it.

It is very common -- Has anyone here read "DANGEROUS GRAINS" ??? You must read it. The author goes ito these secondary food intolerance/allergies. He says we all will end up with them, it seems its a matter of time. We must rotate the good foods so we don't have the same things happen to them.

The poison control center person I talked with said it is a toxic reaction - then he said he had a hard time believing that anyone could get sick from a potato. He said the skin of a green potato or the eyes is the worst, also leaves from the plant and green tomatoes. That surprised me because many people eat fried green potatoes.

I called poision control on another issue (celiac disease) a few months back and they don't have a clue. As many are, answering the phone to collect a pay check and is careless of what we are experience. I was fearful when I called they might have 'out sourced' and I would end up speaking to someone in INDIA. But the person spoke english but was clueless about celiac disease. It really made me think, who really cares?

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I read the posts about nightshade with great intrest. About two year ago I started getting a skin rash on my neck when eating tomatoes which progressed into rash + irritated throat to restricted breathing and now to wheezing. I also started reacting to cayenne pepper, chillies, and papreeka (which is in everything). Though, unlike the other posts I can eat potatos with no problems. It takes me 3-4 days before I am well again after eating the nightshade, and because of the breathing problems I've gone to urgent care. The allergist told me that it was a food intolerance, but probably wasn't totally convinced because he said that I should still go to the emergency room in case it was anaphylaxis. It was through this whole process that I determined that I have problems with gluten. The allergist asked me if I had heartburn. I said yes and followed his advise to take prylosec and quit caffeine. It didn't help and I noticed that my upset stomach and reflux often occurred after eating bread. So I went without for a week and all my stomach problems went away. However I am still growing increasingly sensitive to nightshades (except potato).

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I have been gluten-free since June and I just figured out that potatoes are making me very sick. Does anyone know why we get other food intolerances after going gluten-free? Also, can some people eat other members of the nightshade family? I have been too scared to eat tomatoes, peppers, etc. because the potato reaction is very painful and lasts a long time.

Potatoes are poisonous, as are all nightshades, but most people tolerate them. I think that when our health is compromised we are just that much more sensitive.

Wow, I'm always excited to see someone mention this because I don't know anyone with this problem, except me. I can't eat any nightshades and have been off of them for 6 years. I used to get so sick from eating rattatouie (tomatoes, peppers and eggplant) that it was unreal. I don't get sick right away, usually, but have within two hours. Usually it's more like 12 hours and very painful in my stomach/gut and have migraines. Lasts a couple of days.

I have done research and found it seems to be a toxic reaction, not an allergy, at least in my case. The symptoms are very much like the food poisoning people get after eating potatoes with green skin on them. The active ingredient that seems to be the culprit is solanine. But I'm not certain it's the only problem alkaloid in these foods.

I figured this out for me before finding out about gluten and the symptoms for me are similar. I cannot tolerate even small amounts, like paprika on deviled eggs. I have gotten sick from smelling peppers cooking. I have also gotten sick after touching a cutting board with pepper juice on it (from a friend who was cutting them up for a party) - I washed it in hot soapy water and then made the mistake of wiping my face with my newly-washed hand, which made my skin burn and then made me sick for two days.

Best I can tell, some people don't make the enzymes to break down these alkaloids which in turn cause a poisonous or toxic reaction. This has not gotten any better for me since going gluten free, either.

It's a bummer because so many gluten free baking products contain potato... Sigh.

Anyway, you're not alone or crazy to have these reactions. I have since found that kava kava is a nightshade - would give me headaches every time I took it, finally looked it up and yep, a nightshade. Also noticed I can instinctively spot nightshade family plants out in the open and fear them, like Jimson Weed and even Petunia! And tomatillos are also nightshade.

Here's an interesting link about nightshade-free food products in the UK:

Nomato

Article about nightshades

Also a good page about nightshade intolerance, though it focuses on arthritis:

From Allergy Magazine

Hope some of this is helpful to you...

Stephanie

Very helpful to me too, thanks.

One more thought - a decent coping strategy I have discovered is as soon as I eat something with nightshades in it, if I figure it out (usually pretty obvious) I take 8-10 activated charcoal tablets and drink lots of water. My doctor suggested this and it does seem to help. Still get sick sometimes but not as bad as I have.

Great suggestion, thanks.

Hello, i don't have a nightshade intolerance, i tried a food elim test on that - this is fortunate as I only eat Thai food when I am with my wife - the other common food we used to enjoy was italian but thats got thrown out the window now... I tolerate the red hot chillis.

However from hanging out on another message board, I have noticed that many of the things that bother children with autism also bother the gluten intolerant. On this board there seems to be problems with nightshades, however the autism experts talk about "phenols" and "amines" instead. Nightshades are hi in phenols, so just a thought - maybe the nightshade intolerance is a phenol intolerance? There is info on what foods are hi in phenols and amines on the net, so you can search on that. I take an enzyme supplement called "No Phenol" by Houston enzymes for other reasons (good at breaking down plant fiber and yeast) - this product is designed for the phenol intolerant.

Good information.

I had an interesting experience with potatoes not long ago. I've always loved them but even so there was a slight taste to them I didn't like, after not eating any nightshades for 4 months I tasted a piece of potato and it tasted awful to me. It really made me wonder if our taste buds are our first line of defence and that because as infants and small children we are made to eat things we don't want to we lose the ability to know what is good for us.

Tonight I was talking with a friend who has a small daughter with excema (spelling?) and this child's father has major gluten issues. I had noticed that she avoided the sandwiches at a lunch and my friend was saying that if she has a hamburger she throws the bun away. It seems to me that this child knows gluten is not good for her even though she is only two years old. I also watched her grandmother try to feed her a sandwhich and after resisting for a while, naturally she wanted to please her grandmother and she ate a little. :(

My sister has a nightshade intolerance - I think I have a problem with potatoes but refuse to acknowledge right now because my diet is already so limited I hate to cut those out too - yet.
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Another connection with nightshades and celiac: nightshades have lectins, which is the cause for problems for many people. Wheat, rye, barley, and oats also have lectins. It doesn't surprise me that nightshades bother me as I research.

I am reading a book called: Allergy Free by Konrad Kail N.D. It says: Most lectins come from the indigestible fractions of plant products, often deriving from beans, grains, soy, and wheat. In particular, soybean and wheat lectins can produce an increase in permeability in the cells they bind to, often leading to cell death. Lectins can also cause the intestinal villi to atrophy, as well as other degenerative changes. (By the way, gluten is a lectin!) This doctor also believes Dr. D'Adamo is correct in many of the blood type foods he feels are harmful. Blood type A and B should both avoid tomatoes--however, type O and AB can usually tolerate tomatoes.

Gluten being a lectin does make it much easier for me to understand why nightshades effect me so badly. I guess it all is determined by how sensitive a person is to lectins. Potatoes upset my tummy within hours and they cause constipation, tomatoes, on the other hand, cause tummy upset in a short time and then terrible diarrhea.

At this time, I find I can't have gluten, of course, soy, corn, rice, nightshades, red meat, and many vegetables. Strange though, I can eat my ricecakes still and I can eat Lays Potato Chips without problems. Ann Lee, a celiac nutritionist told me they find this happens sometimes and they do not understand why either.

This last weekend I was back in Michigan for a wedding. On Sunday, my mom made potato salad and I had told her I can't eat potatoes anymore, let alone, I can't have the salad dressing they use. Anyways, when she was done making the salad, she tells me she left me a bowl of plain potatoes, so I could have them. I repeated that I CAN NOT eat potatoes and she said, "Now Deb, there is nothing wrong with potatoes and you have got to eat something!" I had to walk outside and regain my composure--then I explained to her about nightshades. Later, my brother showed up, which surprised me. My mom must have told him I will not eat potatoes and after not seeing or speaking to my brother for 2 1/2 years, the only think he said to me was, "Hey, I have something for you out in my truck" he then snickered and said, "It's a 50# sack of potatoes!" AND, that was the only thing he said to me, except for, I said, "I bet you have a big pot of barley soup for me too, don't ya?" To which he replied, "There is nothing wrong with barley soup, it's the best thing for ya, look at me, I ain't losing any weight!" I was very hurt, to say the least. My family does not need to understand why I can't have certain things, but they should treat me with the same respect they want from me. Not for one minute should anyone tell me to give them a break, that they just do not understand celiac. My father and my sister are both celiacs and this is a very educated family, celiac wise, except, of course, for my brother. Had my mom not said anything about potatoes though, he would not have made that remark.

I hate that you all have these intolerances too, yet as you all say--it is nice to have others totally understand how you feel.

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Yes Yes Yes!! Took me forever to figure this one out though. I thought it was the milk if I had mashed potatoes, then I thought it must be the butter if I had baked potatoes, then I thought maybe it was something in the Combo of the Starch and Protein together issue (the Macrobiotic method of eating says this is a big No No), finally after being diagnosed with Celiac disease 3 months ago and being Totally Gluten-Free (to my knowledge anyway), I was Still having Horrid pains in my stomach, but I noticed this only happened with a meal that contained Potatoes or anything with Tomato base...sauces or whatever. I made a mock Spanish Rice meal one night that tasted soooo good going down with ground turkey and a tomato based sauce that all gluten free and fresh ingredients etc., I had the Worst Reaction I've had in ages from that and was 3 days getting over it and then had Acid Reflux for a week after that.

So, I guess I they aren't called the "deadly nightshades" for nothing...that night I thought I was dying. Yeowwwy!

So now I have scratched potatoes and tomatoes off my list...two of absolute favorite veggies in the world. Just my luck.

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Hi, I am a new member and am replying because I suffer the same problem with nightshade foods. I cannot eat chilli or capsicum without suffering migraine that lasts for two or three days and is not relieved by normal medication. I cannot even use the same chopping board without scouring it well first. Even cafes, chopping veggies with the same knife, gives me the symptoms. Picking the offending food out of a salad makes no difference. I cannot eat tomato sauces of any kind and now are realising that potatoes may have been causing my digestive problems.

For over five years now I have suffred from chronic diarrhea, on and off. Could not figure it out. I am now going through an allergy clinic and they say I have the gene for celiac disease. Gluten free foods sometime relieved my symptoms but also sometimes made them worse. I now think that it is the potato starch in some gluten free foods that does it to me.

The allergy clinic says that all nightshade foods are high in chemicals such as salicylates, but the symptoms of salicylate intolerance are not the same as those I have. Pain racks my body at night but is relieved when I get up in the morning and move around.

The potato poisoning makes sense to me as I often hear my gut rumbling loudly after a meal with potato in it.

I am now wheat free as it causes sneezing, runny nose and general conjestion with me. I haven't tryed rye and wonder if I am gluten intolerant or maybe my gut is so inflammed by the potato it is reacting to everything. I test negative to gliadin, but then I was off wheat when I had the test done so it may be a false negative.

Are you any better on your current diet?

rgds Margaret

Wow, I'm always excited to see someone mention this because I don't know anyone with this problem, except me. I can't eat any nightshades and have been off of them for 6 years. I used to get so sick from eating rattatouie (tomatoes, peppers and eggplant) that it was unreal. I don't get sick right away, usually, but have within two hours. Usually it's more like 12 hours and very painful in my stomach/gut and have migraines. Lasts a couple of days.

I have done research and found it seems to be a toxic reaction, not an allergy, at least in my case. The symptoms are very much like the food poisoning people get after eating potatoes with green skin on them. The active ingredient that seems to be the culprit is solanine. But I'm not certain it's the only problem alkaloid in these foods.

I figured this out for me before finding out about gluten and the symptoms for me are similar. I cannot tolerate even small amounts, like paprika on deviled eggs. I have gotten sick from smelling peppers cooking. I have also gotten sick after touching a cutting board with pepper juice on it (from a friend who was cutting them up for a party) - I washed it in hot soapy water and then made the mistake of wiping my face with my newly-washed hand, which made my skin burn and then made me sick for two days.

Best I can tell, some people don't make the enzymes to break down these alkaloids which in turn cause a poisonous or toxic reaction. This has not gotten any better for me since going gluten free, either.

It's a bummer because so many gluten free baking products contain potato... Sigh.

Anyway, you're not alone or crazy to have these reactions. I have since found that kava kava is a nightshade - would give me headaches every time I took it, finally looked it up and yep, a nightshade. Also noticed I can instinctively spot nightshade family plants out in the open and fear them, like Jimson Weed and even Petunia! And tomatillos are also nightshade.

Here's an interesting link about nightshade-free food products in the UK:

Nomato

Article about nightshades

Also a good page about nightshade intolerance, though it focuses on arthritis:

From Allergy Magazine

Hope some of this is helpful to you...

Stephanie

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i realise this is a really old thread,
 
but ive found it extremely helpfull- all my old joint pain was back this morning after feeling a bit achy. even the staggering around in the morning feelin like my feet are swollen on the soles and makin it hard to walk.
ive just realised that the gluten free bread and pittas ive been eating all contain potato /starch. some things even had milk powder etc. just goes to show you must read and reread ALL ingredient lists.

anyway thought some of the newer members might be interested if suffering from joint pains ect and ive got a fab new recipe for homemade nomato sauce and one for making baked beans - so missing my baked beans lol

also found some granola bar, shortbread and flat bread recipes on google.

i go shopping on mondays so it looks like i,ll be doing my best attempt to try to make it look like i can actually cook and enjoy it !!

i am actually a bit excited by the thought- weird.... 

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i realise this is a really old thread,

 

but ive found it extremely helpfull- all my old joint pain was back this morning after feeling a bit achy. even the staggering around in the morning feelin like my feet are swollen on the soles and makin it hard to walk.

ive just realised that the gluten free bread and pittas ive been eating all contain potato /starch. some things even had milk powder etc. just goes to show you must read and reread ALL ingredient lists.

anyway thought some of the newer members might be interested if suffering from joint pains ect and ive got a fab new recipe for homemade nomato sauce and one for making baked beans - so missing my baked beans lol

also found some granola bar, shortbread and flat bread recipes on google.

i go shopping on mondays so it looks like i,ll be doing my best attempt to try to make it look like i can actually cook and enjoy it !!

i am actually a bit excited by the thought- weird.... 

Thanks for resurrecting this! I was trying to make my own 'nomato' sauce using carrots as a base and look forward to trying the one in the post before yours.

I get extreme nausea minutes after eating nightshades (potatoes are worst), then my head spins and I have to lay down, it lasts about an hour, and at some point within that hour I usually have to vomit. Then I have random sharp, stabbing, pains in my joint, especially fingers and wrists......but can be anywhere.

When I first went gluten free, I just removed gluten from the house (and didn't buy anything to substitute) but when Christmas approached, I bought lots of gluten-free stuff.....boy was I ill! It didn't take long to work out that no gluten-free processed products was the way to go for me, it's a shame I had to hit my head against a wall a few times before I would accept it though, lol.

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hi greebo,

 

im also realising its not gonna be easy and if i have to become a cooking expert to make it a little bit easier then thats the way its got to be :( the excitement i was feeling over the baked bean recipe has erm gone lol

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hi greebo,

 

im also realising its not gonna be easy and if i have to become a cooking expert to make it a little bit easier then thats the way its got to be :( the excitement i was feeling over the baked bean recipe has erm gone lol

Oh no, but 'baked' beans used to be one of my favourites to cook in a big batch and keep in the fridge, and I think you should try it, it's not hard, and very cheap. That is, unless you have found out you can't do beans! (Like me....).

I'm gonna make the nomato sauce to put on the mountains of 'pasta' I'm going to make with my new kitchen gadget (spiraliser), but I'm waiting for delivery, so in the ,meantime I'll make carrot and zucchini ribbons (just using the veg peeler), with the sauce, and beef meatballs- yum!

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Whats in a nomato sauce? I have quite the allergy to tomatos so i can't have them. I also tend to stay away from other nightshades.

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Whats in a nomato sauce? I have quite the allergy to tomatos so i can't have them. I also tend to stay away from other nightshades.

Mainly carrots......I got the link from a couple of posts above in this thread:

http://www.craigsams.com/pages/nomato.html

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    • Feeneyja and Captain NCGS, and Ironictruth It could be SIBO or it could be NCGS as Captain NCGS pointed out. see this research that matches your 84% of SIBO patients. https://www.celiac.com/articles/24058/1/Large-Number-of-Irritable-Bowel-Syndrome-Patients-Sensitive-to-Gluten/Page1.html Below I summarize their findings I quote “nearly 84% of the gluten- free placebo group showed a significant improvement in symptoms compared to just under 26% for the gluten consuming group.  This study confirms that a large number of patients diagnosed with irritable bowel syndrome are sensitive to gluten.  The team (of doctors) suggest that the term of IBS might be misleading (you think) and may change or delay an “effective and well-targeted treatment strategy in gluten sensitive patients”. “ This is in IBS patients already who fulfilled Rome III (lesion) criteria.  They should at least be considered Non-Celiac Gluten Sensitivity (NCGS) but that would be to admit NCGS is a real condition. If you are having NCGS symptom’s (Marsh Lesion) aka Rome III lesions then why is the diagnosis not NCGS instead of IBS?  The problem is most NCGS (apparently 84%) is misdiagnosed as IBS in a large number of cases or possibly SIBO in your case Feeneyja. Even when 84 % of those with IBS show sensitivity to gluten the diagnosis of Non-Celiac Gluten Sensitivity is not confirmed by a simple gluten antibody test and people  consider Non-Celiac Gluten Sensitive (NCGS at least in the medical community apparently) a myth rather they diagnosis someone’s digestive problems with IBS of an unknown cause instead of admitting gluten is the trigger thus allowing them to avoid what is considered a mythical diagnosis to some in the medical community. By all means if  you have been given an IBS or SIBO diagnosis insist at the least on a gluten antibody test and you may save yourself many years’ of suffering before the doctor’s figure out that Gluten is the trigger then you have hope for recovery if you get the right disease. And I don't mean NCGS. Because even this too is confusing low stomach acid I believe with IBS, NCGS and even SIBO. See my posterboy blog post about why  I think this is. JMG aka Captain NCGS I referenced the Columbia University Medical Center (CUMC)  research on NCGS that I think proves your point and mine. here is the care2 article that I think summarizes it well. http://www.care2.com/causes/new-study-confirms-existence-of-non-celiac-gluten-sensitivity.html NCGS is on the "Celiac Spectrum". quoting dr. hyman from the huffpost 5+ years ago and still people seem them as different diseases (or at least deny the existence of the one over the other) http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html "When you get these tests, there are a few things to keep in mind. In light of the new research on the dangers of gluten sensitivity without full blown celiac disease, I consider any elevation of antibodies significant and worthy of a trial of gluten elimination. Many doctors consider elevated anti-gliadin antibodies in the absence of a positive intestinal biopsy showing damage to be “false positives.” That means the test looks positive but really isn’t significant. We can no longer say that. Positive is positive and, as with all illness, there is a continuum of disease, from mild gluten sensitivity to full-blown celiac disease. If your antibodies are elevated, you should go off gluten and test to see if it is leading to your health problems." and the columbia research bears this out. ironictruth you want to catch it at the NCGS stage before it becomes full blown (villi burned to the ground) Celiac disease. You are right to run from the burning house (antibodies) causing you a weak but "positive" diagnosis. This concept of the biopsy "proven" diagnosis is archaic at best and barbaric at worse in this age of serology proven diagnosis of NCGS before the villi burns to the ground so to speak. see this online article by dr. rodney ford that discusses why this is today. http://drrodneyford.com/extra/documents/236-no-gold-standard.html and he too (though in minority) is forward enough thinking to diagnose his patients with serology alone. Why would we use a standard 60+ years old when modern medicine can diagnose the disease much better and much, much sooner than what till there is stage 3 marsh lesions. The dgp test you had can diagnose it the intraepithelial lymphocytes (IEL)  stage. That is good news.  The villi are already smoking (using my analogy) of a burning house from antibodies attacking the body. Problem is and I mean this as a complement to SIBO girl and Captain NCGS (I was this in an article about the ZIKA outbreak patients talking how much more they (those affected by the disease) knew than their doctor's who where treating them at the time) we (us) have become doctor's without diplomas'. One of us each has become an expert at recognizing SIBO, NCGS and Pellagra. The question is which one is right??? Maybe we are all right by degrees. I believe NCGS can be confused for SIBO. But I also believe and the research confirms it in my mind that low stomach acid mimics many of the symptom's of both SIBO and NCGS. So that tells me there is still a disease not yet correctly identified. To me the disease that answer's the most questions in my mind is Pellagra. Ironictruth, Freneyja, JMG taking a b-complex can disprove or prove this theory. here is the full paper by Prousky. http://orthomolecular.org/library/jom/2001/articles/2001-v16n04-p225.shtml decide for yourself but people routinely get better in 3 months time of taking  niacinamide 2 to 3 times daily or a b-complex and niacinamide 3/day for 3 months. The dosage does not matter.  It is the frequency. And a month will be enough to see improvement (100 count bottle).  I used to recommend to my friends a 100 count bottle because it was the most common way to find either Niacin/Niacinamide or a b-complex but when I found out your body could store 3 months worth in the liver and my experience with b-2 (riboflavin) and angular cheilitis (look it up on google images if you don't know what it is) for years probably 5+ I could not get rid of it for nothing. And I took b-2 (for a 100 count round) once before but learned b-vitamins needed to be taken frequently for best effect. So I bought a 300 count bottle (3 months worth) and took them (b-2/riboflavin) 2 to 3 day and the angular cheiliitis (leaking lips, cracked fissures at the side of the mouth) and it was nice and crusty went away and they have never come back since. but this was after I took the B-3 Niacinamide for a couple months firsts then I was able to absorb the b-2 (riboflavin) now and I put this condition in remission (i did not say cure) because if I get low again it might come back but remission. The same thing happened to my GI problems associated with NCGS (serology positive celiac diagnosis) without a biopsy proven (thank God) diagnosis. And that is my story. I would suggest jmg, feeneyja and you too too ironictruth buy a b-complex and see if a couple three months regimen might help put your GI symptom's in remission. we already know from research 5+ years ago that b-vitamins help celiac's with their well being. https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html quoting "For 6 months, patients received daily doses of either a placebo, or of B vitamins in the amount of 0.8 mg folic acid, 0.5 mg cyanocobalamin and 3 mg pyridoxine." They summarize quoting "These improvements, the normalization of tHcy levels, together with the substantial increase in well-being, led the research team to conclude that people living gluten-free with long-term celiac disease do indeed benefit from daily supplemental doses of vitamin B, and that doctors should consider advising the use of B vitamins supplements for these patients." So I am just saying what the doctor's recommend when recommending Niacinamide for your GI problems that Pellagra could be mimicking (masking the true cause) hence the 58% of celiac also have pellagra (that a majority) of Celiac's also are known to have. I am not a doctor.  But You can be a professor though with a masters so while I do preach Pellagra as a co-morbid condition of NCGS/Celiac disease it is only because the doctor's with diploma's research bears this out. So I try and make more people aware of this fact. (no I do not have  a master's either though a friend once said who has a masters said my research would qualify me if I had taken the courses) (And yes I know B-3 was not studied in this paper) but maybe now is the time to point out it should bee! Or SIBO girl, and Captain NCGS you can try it (B-3) for yourselves and see if it helps you the way it did the Pellagra kid/posterboy. If you want to study this topic more I summarized many of thoughts in this posterboy post https://www.celiac.com/gluten-free/blogs/entry/2103-why-and-how-pellagra-is-often-confused-with-celiac-disease-andor-other-gidigestive-problems-the-science-of-pellagra-a-hidden-epidemic-in-the-21st-century-presentingrevealing-as-ncgs-andor-possbily-celiac-disease/ I wrote a blog post that also said "I had Celiac disease but developed Pellagra" but I really think it is the other way around. (it is linked in the above post) if you want to read it there so I won't post it again. I was a pellagrain who was diagnosed first as a celiac.  The same way a SIBO might first be diagnoses as a IBS or NCGS patient.  Or the way a NCGS is first diagnosed as a IBS patient 84% of the time. Remission is possible I believe if and when you find the right/correct disease. And any of these GI conditions can be confused for the other and SIBO girl and Captain NCGS makes good points. But it seems to me Pellagra can be confused for not only the SIBO, NCGS, but if the research is right 58% (the majority) of Celiac's and it is easily reversible in 3 months time. You will not know if you are not willing to try it. **** this is not medical advice just deep research and my own experience with taking Niacinamide. But I will say  I am not the only one who has been helped on this board taking Vitamin B-3. I want you Iroinctruth, Feeneyja, Jmg to be the next ones. I know this post is way too long as usual but I had a lot of ground to cover. quoting a friend 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. posterboy by the grace of God,
    • After my crash and burn gluten challenge of 2016, I wander off yet again Into the land of eastern and alternative medicine to heal. While I am grateful to many (not all) western medicine  Dr s of the past , for the past 2 decades the ones who give me relief for my lifetime ails are the alternative/eastern practitioners. I'm not starting a debate as both branches have their strengths, often the shame is they are seperated in healthcare, for likely humanity and public health imo would be best served by their encouraged collaboration/mutual recognition,but alas not my problem to solve. Much bigger then me and quite frankly, I'm too busy healing to tackle that mountain. Regardless, I now have "shoes that fit my carpet bag " of decades of multiple misdiagnosis /undiagnosis collection. They can be combined and labeled celiac and fibromyalgia. I was shocked at first at the news, I consider those really serious. Is AWOL really that ill? I've read up more  on both disciplines descriptons etc for these conditions, I'm in shock for the "shoes" fit perfectly . I know based on western test results I'm far from textbook/ gold standard celiac (but I failed to get past day 6 of my gluten challenge -likely speaks for itself) and fibromyalgia is quite demeaned/dismissed from my past knowledge amongst the western medicine world and greater society. (Friends /family in western medical fields) Is this still the case? My lifetime gi issues, the 30 plus years multiple chemical sensitivities ( go back to childhood-I keep very close to the vest), 20 plus years symptoms of muscle issues / myalgia, now have the names of celiac & fibromyalgia. Mixture of feelings of relief to be recognized, but also knowing my named illnesses are likely not recognized or are minimised by my western medicine trained family and friends and greater society. Can anyone offer some encouragement to help me cope at this time of healing? My accupuncture visits have been truly helpful, but my last visit is giving me a lot to process chemically, biologically, and spiritually. It's like someone unleashed the flood gates of all the symptoms of both illnesses at once in a combined package for me to experience in a one transparent package.  Very enlightening and to be blunt I feel like crap. So it's time to accept the package names and all, the curtain was lifted and the waxing and waning symptoms of fibromyalgia we're released. Please share any positive support or stories you have on coping with celiac recovery, celiac/fibromyalgia, and  healing by accupuncture. It will be much appreciated. As it is abundantly clear AWOL is here to stay on the celiac.com forums. Thanks  
    • https://www.celiac.com/gluten-free/topic/116482-supplement-and-foods-you-take/ ^ I did this a while back where some of us have posted what we take and eat to get our nutrients. Mines changed a bit since then since I can not eat any grains, sugars or fruits.
    • I take 2 Slice of Life gummy multivitamins and drink 2 Ensure high protein per day. Both are gluten free.
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