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ive seen alot of messages here from people about the ages they were diagnosed with celiac.

couple questions...

- is it genetic?

- can someone develop it later in life (im 23 and was just diagnosed a few days ago), does this mean ive had it my whole life? up until a few months ago i never had any stomach or GI issues.

but reading some of your stories here have really calmed my nerves. when i first found out about celiac, i almost broke into tears. all my favorite foods were on the "Bad" list.

but seeing how some of you have moved on past this and are leading great healty lives, its given me alot of courage. thank you :)


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Guest Libbyk

hey pete-

I am 23 too, and was diagnosed 6 weeks ago. Looking back, I think it was lurking in me since i was 14 ( I got some parasites traveling) and then it got a lot worse over the last year, but seamed "just a worse version of normal" and then I got the flu and all hell broke loose. I guess what I am saying, and I base this on reading this board and every book I can find, is that our bodies express this disease in a million different ways. My sister has it and never really had digestive problems. and she's 32! ( she just gets really dumb what she eats wheat.) I have heard other peope who didn't develop it unitl their 40's.

I know I have been going through a mourning process. I was fortunate to not really like bread or pasta, ever. but I still have moments oh, I can't ever have a powdered donut again. It IS a genetic disease that seams to be more common among women. what I have read says about a 3 to 1 ratio women to men. ( Won't you be a lucky guy at a support group meeting...)

good luck. I know as a newbie I have found this board to be a life line, and an incredibly valuable source of info. I hope you do to. Good luck finding foods you love. there's lots out there for us.



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thx for the reply libby.

the age thing is what really bugs me. i mean... there was to be some kind of trigger. but im no scientist, so who knows.

well, good luck to you to. wishing only the best for you, and for the whole message board.

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I wasn't diagnosed until the age of 61, I've had GI and neurological

symtoms which were attributed to gerd and allergies for about 10 years.

I really started getting really sick after what was supposed to be a one night stay

in the hospital for a simple left thyroidectomy for a benign tumor, turning into

four days in the ICU. I had a bronchospasm in the recovery room, my body filled up with fluid and I almost died. After that my mother had a slight stroke and I

brought her to my home for two years. The doctor thought the stress from

these things happening probably" triggered" the immune system to go on high

alert and I really began having bigtime problems. What I'm trying to say is that

it isn't a matter of " age ", I think it is the amount of stress we have in our lives,

and how we handle it..

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Guest aramgard

Welcome all of you newly diagnosed. I am 69 and was just diagnosed in June 2001. But I developed severe allergies around 11-12 and then dermatitis when I was 14-15. But in those days you were told "She will outgrow it". Then when I didn't outgrow it they said I needed a psychiatrist, because it was anxiety and I was a hypochondriac. Over the years I began to develop the gastric problems (among many other problems) but in Mar-Apr of 2001 I caught the GI flu from my grandchildren. I was so sick they wanted to put me in the hospital but I saw Danna Korn on TV with her son and decided to ask my doctor for Celiac testing. Lo and behold, a diagnosis--finally. Don't mess around about the diet, please stick to it religiously. That diet will save you a lifetime of problems and eventually heal many of your problems. Contragulations, you have passed the first stumbling block of your life--getting a diagnosis. Now it's up to you to follow through. If you need help, we are here to help. Shirley in San Diego

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Greetings to all. This is my first posting.

I'm 46, and was diagnosed about a month ago. My GE noticed "prominent villi" (he later stated that he should have said, "damaged") when he was looking around my gut, trying to figure out if my chronic heartburn was doing any longterm damage. He sent me for the blood tests, and they came back quite positive. He said, somewhat accusingly, "I don't know why you don't have symptoms. You should!" So, now I'm trying to change my diet, heck, my whole life (and that of my family) because of something the doctor noticed by chance? I tell my friends that I'm past the denial stage, and well into the anger stage now. :angry:

My mother, on the other hand, has had the classic symptoms all of my life. I spent much of my childhood trying to find bathrooms in a hurry for her, and standing guard outside while she made disgusting noises and smells in there. I'm trying to convince her to get tested, but she's resisting. I think she doesn't want to deal with the disruption to her eating habits, if she finds out she has it. One of the other ladies in the retirement community makes a big deal of having it, and talks incessantly about it, and she is afraid she'd have to be like that.

I can relate. Part of my job is taking committees out for nice meals (rough life!), and in the past month, the wheat issue has come up in every one of them. I don't want to talk about it, but I can't help talking about it. Anyone else? :( Add that to shellfish (and living on the coast) and nightshade (tomatoes, eggplant, bell peppers) allergies, and restaurant eating gets pretty challenging. I figured steak should be ok (so much for my semi-vegetarian preference), but the last one I got had a (wonderful) sauce on it. Guess there's no avoiding grilling the waiter (hmm, now there's a visual image.... ;) ).

Ok, that's enough whining for now. I do feel better, though. Thanks for being there.

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I have been told it is genetic and carried on the same chromosome as Diabetes.

A person can carry the celiac gene yet not develop the disease. It is not know what can trigger a person to develop Celiac Disease.

Some schools of though are attributing it to the increase of Grains in the human diet over years and that we now eat alot more than previous generations. I tend to agree with this.

Grace was diagnosed at 9 years but in hindsight (ahh a wonderful thing, LOL) I feel she has been Celiac since she was a baby.

I have had our whole family tested after Graces diagnosis and so far no-one else has Celiac disease. However I am mindful of the possible signs and will have myself and others in the family retestd as needed. Because one of us could develop it further down the track.

I hope this helps.


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I believe gluten sensitivity accompanies us from birth. I am 25 years old, and have been diagnosed 2 yrs ago, but I have had stomach and bowel problems all my life; it's just that starting 3 years ago my situation shifted to an unbearable condition. The trigger I believe to be eating a lot at fast-food restaurants, very spicy and very sweet foods and lots of pretzels at university.

From what I read and heard from other Celiacs, the age of 20 is very susceptible of showing this disease in its true severity.

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I began having symptoms of Celiac at age 8, after living through an intolerably stressfull situation. Mine presented as Asthma, and it took years before I could learn all the foods to which I was allergic, and all the foods which would trigger the disease.

Now I'm 59, have a 10 month old grandson who was recently diagnosed Celiac, and my sister was also diagnosed just this week (Shirley, I haven't shared with you lately, but we are now testing as many family members as possible--hurray!).

My grandson and I are also allergic to all milk and dairy, and my list includes allergies to casein, whey, egg whites, and yeast (as well as butter, milk chocolate, and anything else containing milk derivatives).

I am so blessed to be at this stage of life. Being Celiac means I adhere to a strict, nutritious diet, and I am quite healthy now. My grandson is now taking his first steps walking, and I am able to be there to see him do it. The world is a good place to be. Best wishes. Welda

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Guest aramgard

Welda, I'm really glad you are getting everyone tested, I hope by Enterolab. I really don't trust the conventional blood tests and endoscopy. I have had another ear, sinus and chest infection. After 50 years of undiagnosed Celiac, I guess my immune system has taken a big hit. All the more reason for early testing and intervention in the form of a gluten free diet for life. I'll go vote today, even though it's raining and I feel bad because that is my ticket to gripe after the election. If you don't vote, don't gripe about the outcome is my motto. After voting, I will go home and collapse for the rest of the day. Your grandson is walking already? My gosh time really does fly. My great granddaughter is walking also and I'm thinking some of her reactions may indicate Celiac.


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I was 81 when I was diagnosed with celiac disease!! I had been having "weird" symptoms for several (or more) years. Turns out I had the "silent" type. It wasn't until I became very anemic and had lost about 20 pounds that I was diagnosed. After my doctor had me take several diagnostic tests and blood tests, including an endoscopy, it was determined that the form of celiac disease I have is gluten ataxia. The endoscopy was the real determining factor. And so my problems are mainly neurological. Also, from what I read, it would take 6 months to a year to be free of symptoms on the gluten-free diet -- then later I read it could take 2 to 3 years. Well, after 14 months on the diet, I am happy to report that I am much improved, but not as much as I would like. Perhaps because of my age, it will take longer. But I definitely would not go off my diet for anything. The most annoying thing is that I can't eat out as much as I would like. On the other hand, I have learned how to bake a decent loaf of bread and can now whip up a pretty good apple pie and other goodies. So take heart -- there is a good life to be had with celiac disease.

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Guest Blackheartedwolf

I am 29 and just found out I have celiac disease. It didn't really activate until last May 2003, when I went off a medication. I also had an emergency gall bladder removal because of gall stones in Jan 2002. In May 2003 I started getting diarrhea all the time, to the point I even had a couple of accidents, because it would come on so suddenly. Then I started to have stomach pains in the intestinal area. It felt like menstrual cramps, but I wasn't on a period. I broke out with DH twice since December, and that was when my doctor tested me for Celiac. At first we thought the diarrhea was from bile acids being dumped into my intestines, since I had my gall bladder removed. But once I got the rash, a lightbulb went off in my doctor's head.

I also have had depression off and on since my teens, and just felt crappy a lot. I also had problems with irritability. As a child I had a lot of nosebleeds, and some Celiacs are starting to wonder if it is related to celiac disease, as half of Celiacs polled on the Delphi forum voted that they had frequent nosebleeds as a child and teen. I think my birth mother may be a Celiac too, because she always gets stomach aches. (I am adopted.) I haven't called to tell her though.

I read that celiac disease usually activates in children when they are 2 yrs old, or as adults in the 30's and 40's, or it is maybe brought on by stress, surgery, or illness.

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Dear Shirley,

I hope this finds you feeling better. I agree with you about voting. I sent my ballot off by absentee vote about 10 days ago. Yes, Dakota is taking a few steps now. All the testing has been done by Enterolab, and my sister learned this week that she does have Celiac. Thanks for the reply, and I will picture you in good health! Welda

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Yes, it's in the genes!

Please see;


I was diagnosed only 3 years ago aged 57 but I had been ill for over 30 years.

It was thought recently (after research in Bristol UK on 7 year old children) that, because about 1 in 100 of their sample had blood tests which indicate celiac disease- the same as for adults, the condition may start in childhood but often is not diagnosed until we are adults.


My symptoms were anaemia, mouth ulcers, tiredness, thyroid problems.

I also found out I had osteopenia (low bone density) through a DEXA scan.

If you are recently diagnosed please see:


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I was diagnosed last year at 33. Been having progressively worse GI issues since my late 20s.

Looking back now to my early 20s there were plenty of signs of celiac disease especially when I drank beer-check that too much beer :D The symptoms(GI/constant colds/flus and fatigue) would come and go at first but eventually overwhelmed my system to the point where everything I ate would cause severe stomach pains and a constant need to have a BM.

I was too embarrassed to go see my Doc and tell him that I had trouble controlling my BM. So I waited till I was very sick, I thought I had a stomach virus(never heard of celiac disease). At first I was told I had Irritable Bowel <_< then 2 weeks later when I dropped 12 lbs he tested for celiac disease and here I am.

Now 34 33 lbs lighter,1/2 in shorter, and a nice case of ostiopenia. Paying the price for not seeing my Doc sooner although my GI said they probably wouldn't pick up on it until it got as bad as it did.

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Hi all!

I`m Stefania from Slovakia, I`m spending some time now in US. I`m very happy what I`m discovering now here included this excellent forums and all the products that exist in US!!!

I am on gluten-free diet since I was born! So pretty long time, now I`m 24! For me, it is the style of living and sometimes I`m happy that I am Celiac. YOu eat better and live better!

Take care,


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Hi Everyone!

Yes, I can relate to the extreme exhaustion felt--and I was watching television last night with my mom, and saw a commercial for Altovis, which is supposed to treat extreme fatigue. It said that it didn't have any side effects, but the hope is that it doesn't contain any wheat proteins/stabilizers/starches/fillers. Have any of you heard of that? I'm going to a naturopathic doctor tonight, so he should be able to help me out in terms of vitamin supplements--I would suggest to a lot of people on this board to go down that route. Primary care physicians, with all their good intentions, just do not know what to do in cases of celiac disease, and I was even told yesterday by my primary care doctor that my symptoms, while they resemble celiac disease, are a mystery to him, because he doesn't know what to do from this point forward.

I have heard also that celiac disease is genetic, and I trust that, but I was diagnosed last summer at 22, and to my knowledge, no one in my family even has it. Looking back though, I was a wheat/oats/barley kind of pig--I used to eat 4-5 slices of bread, after I came home from high school, and made a huge portion of oatmeal, and in college, I craved the grains in beer, and couldn't stop at just 1 or 2 cans.. I overdid it a lot and had a case of alcohol poisoning when I was 18, and nearly died, and then, I ate pizza, and pasta and cakes/cookies as if it was going out of style. I also had mono when I was 20, and I never fully rested from that, because of course, I wanted to get all A's in my classes, and the mono wasn't going to slow me down..hehe. Do you think that maybe all of that craving for gluten predisposed my body to developing celiac disease? Maybe it just started to reject digesting it anymore? By the way, I am not Irish, but am a quarter Northern Italian, and I have heard that people of that descent are at risk as well.

Speaking of prednisone, when I was having mono, the doctor put me on that, but it made me itch everywhere, and I developed a rash on my chest and neck--any similar reactions if you were put on that? It might contain a wheat protein that wasn't aware of, but at the time, I wasn't exactly looking for that, because celiac disease wasn't even heard of to me then.

Anyway, those are just my experiences and thoughts--take care everyone, and I wish you all the best of luck! :)

--Julie in Ma.

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  • Who's Online   11 Members, 1 Anonymous, 1,051 Guests (See full list)

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    3 cups ripe fresh tomatoes, diced 1 cup shredded green cabbage ½ cup diced yellow onion ¼ cup chopped fresh cilantro 1 jalapeno, seeded 1 Serrano pepper, seeded 2 tablespoons lemon juice 2 tablespoons red wine vinegar 2 garlic cloves, minced salt to taste black pepper, to taste Directions:
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    Celiac.com 06/15/2018 - There seems to be widespread agreement in the published medical research reports that stuttering is driven by abnormalities in the brain. Sometimes these are the result of brain injuries resulting from a stroke. Other types of brain injuries can also result in stuttering. Patients with Parkinson’s disease who were treated with stimulation of the subthalamic nucleus, an area of the brain that regulates some motor functions, experienced a return or worsening of stuttering that improved when the stimulation was turned off (1). Similarly, stroke has also been reported in association with acquired stuttering (2). While there are some reports of psychological mechanisms underlying stuttering, a majority of reports seem to favor altered brain morphology and/or function as the root of stuttering (3). Reports of structural differences between the brain hemispheres that are absent in those who do not stutter are also common (4). About 5% of children stutter, beginning sometime around age 3, during the phase of speech acquisition. However, about 75% of these cases resolve without intervention, before reaching their teens (5). Some cases of aphasia, a loss of speech production or understanding, have been reported in association with damage or changes to one or more of the language centers of the brain (6). Stuttering may sometimes arise from changes or damage to these same language centers (7). Thus, many stutterers have abnormalities in the same regions of the brain similar to those seen in aphasia.
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    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
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    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
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    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.

    Jefferson Adams
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    A team of researchers recently set out to develop a method to determine gluten intake and monitor gluten-free dietary compliance in patients with celiac disease, and to determine its correlation with mucosal damage. The research team included ML Moreno, Á Cebolla, A Muñoz-Suano, C Carrillo-Carrion, I Comino, Á Pizarro, F León, A Rodríguez-Herrera, and C Sousa. They are variously affiliated with Facultad de Farmacia, Departamento de Microbiología y Parasitología, Universidad de Sevilla, Sevilla, Spain; Biomedal S.L., Sevilla, Spain; Unidad Clínica de Aparato Digestivo, Hospital Universitario Virgen del Rocío, Sevilla, Spain; Celimmune, Bethesda, Maryland, USA; and the Unidad de Gastroenterología y Nutrición, Instituto Hispalense de Pediatría, Sevilla, Spain.
    For their study, the team collected urine samples from 76 healthy subjects and 58 patients with celiac disease subjected to different gluten dietary conditions. To quantify gluten immunogenic peptides in solid-phase extracted urines, the team used a lateral flow test (LFT) with the highly sensitive and specific G12 monoclonal antibody for the most dominant GIPs and an LFT reader. 
    They detected GIPs in concentrated urines from healthy individuals previously subjected to gluten-free diet as early as 4-6 h after single gluten intake, and for 1-2 days afterward. The urine test showed gluten ingestion in about 50% of patients. Biopsy analysis showed that nearly 9 out of 10 celiac patients with no villous atrophy had no detectable GIP in urine, while all patients with quantifiable GIP in urine showed signs of gut damage.
    The ability to use GIP in urine to reveal gluten consumption will likely help lead to new and non-invasive methods for monitoring gluten-free diet compliance. The test is sensitive, specific and simple enough for clinical monitoring of celiac patients, as well as for basic and clinical research applications including drug development.
    Gut. 2017 Feb;66(2):250-257. &nbsp;doi: 10.1136/gutjnl-2015-310148.

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    • Well you approached the SIBO side...what about candida? Stuff actually sets up worse after antibiotics. The good bacteria helps kill the stuff, but antibiotics can make it worse and kill off the good guys. It can cause gas, bloating, cravings for sugar, a almost drunk/hung over feeling. If your diet has been high in carbs/sugars then good chance.

      Other thoughts it could be another AI disease or gut issues....some of us get those, I gut Ulcerative Colitis by example with its own set of triggers...in my case this includes the rare sugar triggers.
      Could also be your not as gluten free as you think, if your eating out, using a shared kitchen, did not clean out the kitchen and replace certain things you could be still getting it from sources...this diet can take over year to master. Reread the newbie 101 section to be sure.
      To be on the safe side go to a whole foods only diet for a bit, also be sure to remove dairy and oats from your diet....the enzymes to break down dairy are from the vili which are damaged, and oats are commonly CCed along with the fact 10% of celiacs react to oats also regardless.

      Food intolerance issues and sensitivities...gluten is not our only issue, most of us develop some other kind of food issues with certain foods causing symptoms....keep a food diary, and go to a whole foods only diet, then try certain foods and record changes it might be a spice or something like onions, garlic, tomatoes, potatoes, carbs, soy, corn, etc.

      As to the lump I am unsure, hernia? Gas distention? Like hard lump you have to press to feel, or a distended soft lump? Do you have blood in the stool, or signs of bruising, darkening around the lump? Yellish skin, or yellow in the whites of your eyes? I would really see about having a doctor look at it.  
    • Hi Everyone, I've been diagnosed with celiac and I have been gluten free for the past 9 months, but I have not getting better.  The only thing that improved is that I no longer have diarrhea after eating meals.  I have bloating after eating, stomach pain, severe dry eye and a lump on my left side below my ribs that is becoming more painful lately.

      I am wondering what this lump can be?  I've had it since before I was diagnosed but it has only recently been getting painful and feels like it is getting bigger.  I had a CT scan a year ago that didn't find anything and the colonoscopy and endoscopy I had that found the celiac disease 9 months ago didn't find anything related to the lump.

      I'm wondering what this lump could be.  Can it be inflammation from the celiac or is it likely something else? I'm seeing my gastroenterologist tomorrow and I'm looking for suggestions.  He first thought the lump was gas and that I had SIBO / bacterial overgrowth but two weeks of Doxycycline made absolutely no difference for me.  I would love to have some ideas of what this could be so I can get him to run some tests on this lump. Thanks.
    • Grief is natural and something we have to get through and it was a few years for me. First i just stopped seeing fast food joints. To me they were empty lots. I stopped watching tv with commercials. Thank you Roku, Netflix, Amazon and HBO. Those helped. Dietitian didnt give me anything i didnt know. Read some Celiac and Nutrition books.  Things got easier when the hubby agreed the house should be gluten free. No cross contamination and no temptation. Love my crock pot and rice cooker ( going to buy an instant pot next). Hate to cook. Love fresh fruit. Steam veggies in glass bowls in microwave. Boil up dozen eggs always on hand. Found gluten free crackers and popcorn on Amazon. Just search gluten free. Key is to make a bunch of food then freeze it in meal sizes. Always having food cooked or fresh on hand helps cravings. And find favorite snacks to look forward to. All said and done the gluten-free non processed food diet has reversed my heat disease and lowered my diabeties risk. All bad numbers are normal and being 50 that is great.
    • You really do need to get tested. The earlier you catch it the less likely serious and permanent damage to your body will occur. One of the Celiac associated medical problems is osteopenia/osteoporosis because of poor mineral absorption. 
    • Yeah here you can read into getting diagnosed, if celiac then you can rest assured you know hte cure and it will just take time with the gluten free diet. The newbie 101 thread will have many of your answers. Might be worth keeping a food diary just for references for now, and if you intend to get tested you need to be eating gluten sadly.

      I used to get sick more often when eating gluten...but if you immune system is fighting one enemy on the front line it gives way for something else to sneak past it and hit you hard. So yes I would say so.....I hardly ever get sick now days with a virus.....food intolerance, reaching my personal tolerances for ceratin types of foods in a meal, or some other random quirk normally makes me sick...but these are normally just purge and go on sick....not painful for hours.  
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