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      Frequently Asked Questions About Celiac Disease   04/24/2018

      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 Celiac.com's FREE weekly eNewsletter   What is Celiac Disease and the Gluten-Free Diet? What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
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Sam81

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Hi there, I am new and have been reading the forums. Here is my story/problem...

I was diagnosed at 16 with Bechets - very rare apparently for a white/british girl. I was put on Dapsone 50mg - 100mg daily + steroids if needed. I ave always suffered with what I've been told is IBS and bowel issues generally. Recently things have got worse. I am vegetarian and tried a diet (to lose weight) that was pretty much just fibre/gluten foods. in 4 months I lost 3 and a half stone, but still have a large belly. Now, most fibre/gluten foods I eat cause pain, wind, i'm always tired, I come out in a nasty rash on my buttocks that itches like nothing I have EVER felt within hours of eating certain foods and i am truly fed up with the nausea. I have recently been blood tested for Celiac and told they were normal results (whatever normal is) and have an appointment with dr tomorrow to discuss this further. Is it possible it's false result? and can anyone give me some good things to ask when I see him as I have a feeling he'll brush it off.

Im vegetarian and worried how I'll manage self diagnosis and cutting gluten out by myself! I feel I tick all the boxes for celiac. I haven't had dapsone for 18 mths due to pregnancy and breastfeeding and the dr's have suggested possible remission from bechets.

Any help/suggestions/advice is very greatly appreciated!

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Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

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Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

Thanks, the rash is definitely not bechets, i suppose its possible its the bechets but thats not normally food related - im really struggling with tolerating foods that are either high in fibre or gluten...

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I would think if you are eating a lot of high fiber/gluten items, then the test result would come back positive. I never had the blood test....they went straight to an endoscopy with me, so I am not a pro at knowing the blood test stuff. I was told I had IBS also, and to go on a high fiber diet (TONS of wheat products...>:() for 2 months...I went back 2 months later and told them it made everything worse. When they got in there for the endoscopy, there was no question I had Celiac. If you have good insurance, maybe get a colonoscopy/endoscopy? At least you would know for sure...stress from wondering what's wrong could make things worse I would think. Hope this helps?? Hope they figure it out for you!!!

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I would think if you are eating a lot of high fiber/gluten items, then the test result would come back positive. I never had the blood test....they went straight to an endoscopy with me, so I am not a pro at knowing the blood test stuff. I was told I had IBS also, and to go on a high fiber diet (TONS of wheat products...>:() for 2 months...I went back 2 months later and told them it made everything worse. When they got in there for the endoscopy, there was no question I had Celiac. If you have good insurance, maybe get a colonoscopy/endoscopy? At least you would know for sure...stress from wondering what's wrong could make things worse I would think. Hope this helps?? Hope they figure it out for you!!!

Sorry to post AGAIN, but here's something I JUST read!! How weird is that? Made me think of this post....hope it helps?

http://www.patient-experience.com/index.php/overcoming-celiac-disease/

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There is a rash called dermatitis herpetiformis that is closely associated with celiac diseease. That rash (DH) causes blisters and the doctor can biopsy the skin near the blister to check for antibodies to gluten.

People with celiac disease have a higher than usual chance of getting other auto-immune diseases also.

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Sorry to post AGAIN, but here's something I JUST read!! How weird is that? Made me think of this post....hope it helps?

http://www.patient-experience.com/index.php/overcoming-celiac-disease/

Thanks for this link, I get the feeling this is how it'll be for me as that was similar to how it was for the bechets diagnosis, lots of negative results and in the end almost a process of elimination... It's a long tiring road... If I get no joy I will just have to try different things. Dairy/gluten/fibre see if anything works. Colonoscopy is scheduled for end of year...

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Apparently the celiac test results are not in and take 2-3 weeks. Regular bloods are all normal - no signs of anaemia, inflammation (chrones) etc. Colonoscopy brought forward to end of August. Can a colonoscopy confirm Celiac??

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Apparently the celiac test results are not in and take 2-3 weeks. Regular bloods are all normal - no signs of anaemia, inflammation (chrones) etc. Colonoscopy brought forward to end of August. Can a colonoscopy confirm Celiac??

Colonoscopy looks at the wrong end. You need an endoscopy with small bowel biopsies to diagnose Celiac

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Colonoscopy looks at the wrong end. You need an endoscopy with small bowel biopsies to diagnose Celiac

Yes, exactly. When I went in for my colonoscopy (which found nothing but my healthy colon ;)), they asked if I wanted an endoscopy also while they were at it, I said SURE! Why not? So glad I did or they wouldn't have found it.

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Yes, exactly. When I went in for my colonoscopy (which found nothing but my healthy colon ;)), they asked if I wanted an endoscopy also while they were at it, I said SURE! Why not? So glad I did or they wouldn't have found it.

Yes - I'll be asking for an endoscopy when I go in...

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Yes - I'll be asking for an endoscopy when I go in...

You'll want to ask for an upper GI endoscopy, or EGD (Esophagogastroduodenoscopy)

Endoscopy refers to all techniques using an endoscopy, including both upper GI tract and the colon/large intestine.

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...similar to how it was for the bechets diagnosis, lots of negative results and in the end almost a process of elimination...

Okay, I feel like this might need to be asked: what were the symptoms that led to their diagnosis of Bechets? Did they ever have a test that was definitely: this is Bechets! Or was it all elimination of OTHER conditions because they couldn't figure out what else it might be?

I only ask because a lot of the symptoms I'm reading about (I, too, didn't know much about this) can also be symptoms of celiac disease. So was wondering what exactly led them to suspect Bechets in your case, on the off chance it might be something else.

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Okay, I feel like this might need to be asked: what were the symptoms that led to their diagnosis of Bechets? Did they ever have a test that was definitely: this is Bechets! Or was it all elimination of OTHER conditions because they couldn't figure out what else it might be?

I only ask because a lot of the symptoms I'm reading about (I, too, didn't know much about this) can also be symptoms of celiac disease. So was wondering what exactly led them to suspect Bechets in your case, on the off chance it might be something else.

It was process of elimination. I had one episode of genital ulcerations. Lot's of mouth ulcers, tired/fatigue, my white blood cell count was low. I did have a rash that kept appearing on my legs but I have always been told it is NOT bechets related (never found what it is). I was put straight on Dapsone, and diagnosed with Bechets and IBS for the abdominal pain and bowel issues. I have just been to the Dr's who says my blood test for celiac is negative but won't give me the results. Last night I tried a new vege product and within hours had a rash on my elbows and knees (usually only get it on my buttocks). Dr is saying it is an allergy rash, not celiac - refusing to give me endoscopy as it costs extra. My concern is simple - is it possible that I have celiac and not Bechets and the dapsone has masked the symptoms of the celiac until now when I've come off it (2years) due to pregnancy and breastfeeding? Really fed up of no-one (Dr)listening.

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As a further point i wanted to add, in the last 4 days my stomach pain and nausea as reached new heights and the muscles in my back and legs have become sooooo sore they are untouchable. Dr doesn't think it's related - could it be?? I've managed to get a Colonoscopy at then end of August and a referral to a Dermatologist but that I think - is my lot.

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If the doctor doesn't think you have DH then why did they prescribe Dapsone? That med is for DH. DH is the skin form of celiac. The other symptoms you are describing do sound like symptoms that many of us get. If they refuse to do an endo on you then do go gluten free anyway and see if that helps. Some of us have to take things into our own hands unfortunately as doctors can be clueless. Also if you are in the US you have a legal right to copies of any tests that are done. Don't ask for them TELL them you want copies of the results.

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If the doctor doesn't think you have DH then why did they prescribe Dapsone? That med is for DH. DH is the skin form of celiac. The other symptoms you are describing do sound like symptoms that many of us get. If they refuse to do an endo on you then do go gluten free anyway and see if that helps. Some of us have to take things into our own hands unfortunately as doctors can be clueless. Also if you are in the US you have a legal right to copies of any tests that are done. Don't ask for them TELL them you want copies of the results.

They prescribed Dapsone for the Bechets - apparently it is also treatment for that. I've been on it for 12 years. I'm in the UK and apparently the Dr has to OK my request for my results and as he's being really annoying I doubt I'll get them. I think I've been mis diagnosed... But blood results are negative! Also bread doesn't set me off very much other than tummy pain - which is what he keeps telling me - if you can tolerate bread - you don't have celiac...

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Are there "types" of gluten? Wheat gluten? barley gluten? Is it possible barley gluten makes me re-act stronger than wheat gluten?

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My concern is simple - is it possible that I have celiac and not Bechets and the dapsone has masked the symptoms of the celiac until now when I've come off it (2years) due to pregnancy and breastfeeding?

Honestly, and this is only a guess by a complete layman, here: I'd say yeah. It's possible.

Do you NEED a diagnosis? Whether you are diagnosed or not, the treatment would be the same: stop eating gluten. Stop eating foods contaminated by gluten (cross-contamination). No diagnosis needed.

The reason I ask is that if they don't think it's celiac disease...you could just go on the diet yourself and see how it does for you. Although getting the drugs gluten free might be tricky. But many here on the board ended up doing that because they're in the same boat as you: no doctors will help, or test, or even LISTEN.

Lucky for celiacs that we don't NEED the doctors for any medication for our treatment. We can tell them to kiss our petutie and go check it out for ourselves. Some prefer a diagnosis, but we don't need it. And if everything improves on the diet, then you've got a good case. If nothing improves, you'll know that the diet likely isn't the issue.

And if you improve and they want you to make yourself sick all over again so they CAN test now? Well...they should have listened to you in the first place, right? They can go suck eggs.

Uh, yeah...bad doctor moment today. :rolleyes:

And as an aside: a colonoscopy won't diagnose celiac disease. They have to test the other end, in the upper intestines below the stomach. So IF they told you that the colonoscopy would help diagnose this, they're either trying to pass you off, or are showing their ignorance.

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I totally agree. I diagnosis would get me food on prescription which would help us financially and also help my family to accept I have it (this is the main reason) although I've gone down hill so quickly I tthink it may be sinking in. The rash I came out in yesterday has gotten worse since - covered in it now. My fault for eating shreddies!

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Ok so I have my test results in front of me, finally after much fighting - with the celiac result missing! In it's place he has put the word negative - his reading. He has tested me for Anti-tissue transglutnase - is this right or should there be more?? He has listed my full blood count but removed the celiac one. I am in the UK - if there are any UK sufferers/doctors that can help please do. It really feels like he's trying to keep info from me!

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There should have been more test results, yeah, if he did it right. The term 'anti-tissue transglutaminase' is actually not completely specific. There are two kinds that are usually tested in celiac blood panels: IgA and IgG. There's also the IgA Antiendomysial Antibodies test, AND you should have been given the Total Serum IgA test to make sure you are not deficient in IgA, because a certain percentage of Celiacs have this deficiency, and if they do, their tests come back falsely negative for celiac disease.

Re: the 'reacting to bread' comment. I DO react to bread (diagnosed with blood and biopsy). But I don't have any gut symptoms to it at all. No big D, no tummy pain even. Many doctors would tell me I don't react to it, as a result.

And jeesh, it very much does sound like he's trying to keep information from you. :blink: Is there any legal recourse to getting your results?

If he had to give the okay for you to get your test results...can you call the office, by chance, and mention that you need all the results that he gave the 'ok' for, but you'd like to drop by and get them because your copy is missing some parts and you can't read the complete results anymore (which is technically true, even if the problem with reading the results is because the doctor obscured them on purpose).

With so much obfuscation by the doctor re: the tests, personally I would be very concerned right now that you don't have a correct diagnosis. If he can't be open with you about your testing and trust YOU, how can you trust HIM?

Argh - Man, I think I would be going gluten free ASAP...or planning to let my dog poo on the doctor's front door step, LOL. At least it would make me feel better, eh? ;)

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That's awful that the doc would do that to you. I'd not even be returning to that doc after a stunt like that. (Although it's illegal here, as someone else noted. But still!).

I'm personally not diagnosed, but my recent issues with milk brought the issue up again. CAN you go to a different doctor? If so, you might want to. Sounds like this doc has other interests than your health.

The fact that he's *hiding* the levels suggests, to me, that it was actually positive and he's a jerk. He must just enjoy seeing you in pain or something. Go Gluten Free. It's hard at first, but it gets easier. And you'll enjoy the new foods. Mom got English Muffins the other day when we went shopping, and I like them! (I never really liked English Muffins before though). New foods that taste better and most (I've seen) are made with better ingredients, too!

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So you can have mouth sores from eating the gluten? I continually test neg but find that eliminating the gluten helps. I however have constipation worse since going gluten free. Ate some gluten yesterday and had mouth sores by bedtime. I have had them many times before but never put the two together until now. Very frustrated and tired. Lost a lot o weight and not sure how to put it back on.

Well, my knowledge of Bechet's is based on the wiki article I just read, but it says gastrointestinal pain, nausea, diarrhea, and painful ulcerations around the genitals (which may be the rash?) are all symptoms. Could it be you're getting new symptoms of Bechet's since you're not on the medicine anymore?

You can have the skin around the rash biopsied to see if it is a celiac rash. I don't believe that's the normal location, though.

You might try going gluten light. Grains can be difficult on the digestive system. Focus on fruits, veggies, etc. I'm also vegetarian, and though my diet feels a bit limited at times, I'm making do well. Cooking a lot (soups, enchiladas, gluten-free baked stuff) helps with the restrictive diet.

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Yes, mouth sores are one of the symptoms that can come up. There also seems to be an adjustment period bowel-wise in the months after, but that should even out. Maybe try some higher-fiber veggies?

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    Celiac.com 04/23/2018 - A team of researchers recently set out to learn whether celiac disease patients commonly suffer cognitive impairment at the time they are diagnosed, and to compare their cognitive performance with non-celiac subjects with similar chronic symptoms and to a group of healthy control subjects.
    The research team included G Longarini, P Richly, MP Temprano, AF Costa, H Vázquez, ML Moreno, S Niveloni, P López, E Smecuol, R Mazure, A González, E Mauriño, and JC Bai. They are variously associated with the Small Bowel Section, Department of Medicine, Dr. C. Bonorino Udaondo Gastroenterology Hospital; Neurocience Cognitive and Traslational Institute (INECO), Favaloro Fundation, CONICET, Buenos Aires; the Brain Health Center (CESAL), Quilmes, Argentina; the Research Council, MSAL, CABA; and with the Research Institute, School of Medicine, Universidad del Salvador.
    The team enrolled fifty adults with symptoms and indications of celiac disease in a prospective cohort without regard to the final diagnosis.  At baseline, all individuals underwent cognitive functional and psychological evaluation. The team then compared celiac disease patients with subjects without celiac disease, and with healthy controls matched by sex, age, and education.
    Celiac disease patients had similar cognitive performance and anxiety, but no significant differences in depression scores compared with disease controls.
    A total of thirty-three subjects were diagnosed with celiac disease. Compared with the 26 healthy control subjects, the 17 celiac disease subjects, and the 17 disease control subjects, who mostly had irritable bowel syndrome, showed impaired cognitive performance (P=0.02 and P=0.04, respectively), functional impairment (P<0.01), and higher depression (P<0.01). 
    From their data, the team noted that any abnormal cognitive functions they saw in adults with newly diagnosed celiac disease did not seem not to be a result of the disease itself. 
    Their results indicate that cognitive dysfunction in celiac patients could be related to long-term symptoms from chronic disease, in general.
    Source:
    J Clin Gastroenterol. 2018 Mar 1. doi: 10.1097/MCG.0000000000001018.

    Connie Sarros
    Celiac.com 04/21/2018 - Dear Friends and Readers,
    I have been writing articles for Scott Adams since the 2002 Summer Issue of the Scott-Free Press. The Scott-Free Press evolved into the Journal of Gluten Sensitivity. I felt honored when Scott asked me ten years ago to contribute to his quarterly journal and it's been a privilege to write articles for his publication ever since.
    Due to personal health reasons and restrictions, I find that I need to retire. My husband and I can no longer travel the country speaking at conferences and to support groups (which we dearly loved to do) nor can I commit to writing more books, articles, or menus. Consequently, I will no longer be contributing articles to the Journal of Gluten Sensitivity. 
    My following books will still be available at Amazon.com:
    Gluten-free Cooking for Dummies Student's Vegetarian Cookbook for Dummies Wheat-free Gluten-free Dessert Cookbook Wheat-free Gluten-free Reduced Calorie Cookbook Wheat-free Gluten-free Cookbook for Kids and Busy Adults (revised version) My first book was published in 1996. My journey since then has been incredible. I have met so many in the celiac community and I feel blessed to be able to call you friends. Many of you have told me that I helped to change your life – let me assure you that your kind words, your phone calls, your thoughtful notes, and your feedback throughout the years have had a vital impact on my life, too. Thank you for all of your support through these years.

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    • hi All, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway.  It wasn't too late!  One week later. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange.  So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.   this is just the short version  but I've tried to include important info.  Anyone else have a similar story in any way?
    • First, about 35% of the population carries the genes that could (rare) develop into celiac disease.  The genetic test just simply rules out celiac disease.  I guess your hubby  could develop it....some day or never.   Baby?  Get your daughter to your Ped.  Babies can develop rashes (e.g. eczema)  for so many things.  It could be a wheat allergy and not even celiac disease which is an autoimmune disorder.  Celiac disease in the form of dermatitis herpetiformis (aka celiac rash)  is pretty unheard of in infants.  It is SUPER rare — like one case in 2005 and the researchers dug through case studies going back to 1966.   Just curious.  The old method of grain (cereal) introduction was to give rice cereal.  Is that old outdated advice?   Kudos for you for breastfeeding!    It was my fondest aspect of early motherhood.  So easy and convenient.   Get to the doctor.  Do not try to diagnose an infant!  Trust your good mommy instincts.  Hopefully your baby just is not ready for wheat.  I recall that when introducing new foods you were to give a little and wait a few days for reactions.  Sounds like it might be as simple as too much of a good thing.    
    • hi Bananababy, I had been getting so gradually sick that I don't know when it started, (but I am now assuming 1994).  In 2008, I succumbed to pressure from my insurance rep to get more insurance, and they would even come to my house to test my blood.  I was denied insurance and recommended to see my doctor, who told me I had the liver of a severe alcoholic.  I very rarely drink. I went for tests and the doctor was baffled.  He said I should lose weight.  He said it was likely fatty liver disease. That was 2008.  For the next few years I got tests, tried to eat healthy, and every so often I would see if it was helping my liver numbers. I got stomach aches when I ate toast or a sandwich, but didnt link it to the toast except later, in hindsight.  How could toast give me a stomach ache?  Anyway, on the advice of my doctor, I tried very hard to lose weight, so went lo-carb.  One day, I had had no breakfast and at church 'goodie-time' was unable to resist all the carbs.  Later that afternoon, I felt like someone had literally poisoned me. This was now 2011.  I decided to not eat or drink anything but almonds and organic cold pressed  apple juice in a glass jar, and ate only those things for the next 3-4 days while I looked for symptoms on the Internet. I narrowed it down to celiac disease and went to the doctor.  I refused to eat gluten to get the test.  I decided not to eat gluten and I got better. I then started a job in China.  I learned how to say things like "no soy sauce" since it's made from wheat.  I got so much better.  I knew what my reactions were to gluten, especially the one that happened first: I would get a shakiness inside, like my blood system was micro-vibrating. i got the flu and was in bed for three days straight eating only mandarin oranges and water.  After a couple of days, I got that shakiness, suddenly, lying in bed.  I was astounded, cause I had only water and oranges.  Then I remembered that I had taken two Advil, in the gel cap form.  I looked on the Internet, and sure enough, the gel caps contained gluten.  Wow.  Even that small amount in two gel caps set it off. I was very vigilant.  Then one day, back in Canada, I was making hot dogs for a four-year-old and I had fresh bakery buns.  I couldn't resist.  I guess I thought, well, it's been a couple of years gluten free, let's see what happens.  I ate one and a half huge bakery hot dog buns on impulse.  Big mistake. I got so, so sick.  I was sick for 6 weeks with various symptoms.  Spleen pain, liver pain, kidney pain, migraine headaches, stomach issues, constipation, dizziness, brain fog, irritability, etc.  This was 2013. After one week of still being sick, I thought it's probably too late, but I should get that celiac test to see if there are detectable antibodies.  I went to the doctor, who didn't think it was necessary and insisted it was fatty liver disease and not celiac.  He humoured me and gave me the requisition anyway. i was shocked to see that my antibody level was 99. ( If you have less than 20 you don't have Celiac. It is called tTg test).  If you have 100, they say you don't really need a biopsy and it's pretty much confirmed celiac.  The doctor was a little bit embarrassed and said, "looks like you've diagnosed yourself". So finally he shut up about fatty liver disease.   I got so much better living in China.  I occasionally slipped. I  then went back to canada for a year.  I developed DH, as I got these lesions starting on my thumb and then on my fingers and palms.  Finally after 6 months I cut out dairy.  I had heard it was also somehow bad for Celiacs from the Internet but I really didn't want to cut out dairy as it was bad enough without gluten.  I finally did and the DH cleared up.   Then back to China.  I would go back to Canada twice a year for the time off from spring and summer holidays.  It was really hard to be around western food temptations and I would get "glutened" even though I tried hard. I began to get a strange pain in my leg and the doctor in canada said it was likely arthritis in my hip.  i went for an xray but it didnt show anything.  it really killed me to get that pain in my leg and then in my hip.  i would cry out and have to sit down.  i started riding my bike to work in china cause it was painful to walk very far.  I had started to reintroduce dairy while in China and found that I could eat yogurt, which I love. I had heard that people blamed their gluten reactions on Roundup, or glyphosate, because they could eat flour products in other countries but not North America.  One day about six months ago I made cookies for my students.  I wore gloves and was very careful.  Before this, I wouldn't even be in the same room with flour.  But nothing happened.  Then I tasted a cookie.  Nothing happened!!  The next day, I ate a whole cookie. Nothing happened!!  I began to think there was something to the theory of North America and roundup.  I still avoided flour in general cause I didn't want to push it, but I started eating soy sauce and relaxed a bit - started going to restaurants in china, etc. instead of micromanaging food in my kitchen, cause I was evidently not reacting to gluten in China.  I then realized that the only episodes of pain I had had were when I was in Canada the previous summer and spring.  Very strange. So.  I got back to Canada, last spring, had my usual gluten free meal on the airplane, and then visited my mother.  I ate only organic yogurt.  Nothing else, and a few hours later I was attacked by almost every gluten related pain I had ever had.  My hip was suddenly shooting pain and I cried out and limped to the couch.  My mother asked, what did you eat?  I said, nothing!  Only organic yogurt!   Of course after any glutening, it takes weeks for these pains to subside, and I endured pain stabs in my spleen for a while.  Then back to China, where I was able to eat normally.  No pains, nothing.  I ate yogurt, made myself with uht milk imported from Germany or Australia, and I was fine.     Until the day when I ate one of the chocolate bars I had brought from Canada as prizes for my students.  Instant reaction! Spleen pain!  I had heard that sugar cane was as bad as flour for being drenched in roundup.  Now I was convinced. It was definitely stuff from Canada that was the culprit.  Only farm products.  Yes, they say the yogurt is organic, but I'm sure they feed the milk cows hay that has been exposed to roundup.   Now I know exactly what I can eat and where.  I love the food here, and it's safe.  There are exceptions.  They use pesticides on fruit, cause I get a stomach ache when I eat certain fruits, but it's a different reaction that the gluten reaction,  I can eat flour products without a huge reaction, but I still have celiac, because I do get reactions even from Chinese flour, just not as bad as I did before.  A mild sick feeling, like something is off, kind of unbalanced, and of course the inevitable shakiness.  I react much worse to Canadian chocolate.  But there is a huge difference between food here and food there.  A very painful difference.  Hard to figure out, but I think I have. so here's my theory,  roundup actually causes the celiac disease, or whatever disease you might happen to be genetically susceptible to. (My uncle has arthritis in his hip). If you keep ingesting it, you will get gradually sicker and sicker and get some kind of disease.  If you stop eating roundup completely, you will heal with a healthy diet.  If you already have a disease like celiac or DH you can manage it and stay healthy if you are totally roundup free. My dad died of nonHodgkins lymphoma and he insisted it was the roundup the neighbor had been spraying on his farm, right next to my dads organic hobby farm.  Now I believe him. I wish I'd been able to piece this together a bit earlier.  Since 1994, many diseases have hugely increased.  That's when they started with the roundup and there is a one on one correspondence on the graphs with roundup use and  many diseases. sorry for the novel but I just can't keep this all to myself,  I'm like the canary in the mine.  But roundup is everywhere so I don't know if you can really avoid it in North America, sadly. My advice is to move elsewhere and figure it out like I did. i saw a youtube video by an MIT researcher that they are now figuring out that glyphosate actually takes up the place of the essential amino acid glycine in your body.  Because they are molecularly similar, glyphosate gets in there and stops glycine from being able to do it's job in your body.  So it causes all sorts of problems in a gradual way and eventually you will have trouble. i hope this helps!  Stay away from farm products!  I hope it's not true what the conspiracy theorists say (that they are spraying chemicals, chemtrails etc.  I don't know if they are spraying roundup) but if it is, that's the end of the world as we know it.  I don't really want to go there,  I just know what I know and I'm sharing it.  Be blessed.  
    • Also not that it matters, but have had low iron on and off last 2 years. Just another reason why I’m testing. 
    • Every lab has different ranges.  Post the ranges and we might be able to help.
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