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Lisa

Healed And Never Get Sick

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:blink: I have been gluten free since my diagnosis August 2005.

Although I cook most of my meals and I order well when I eat out, I NEVER get sick. That sounds like a good thing, but I do wonder. Surely, in the past year, I have been exposed to some sort of goof or cross contamination. I don't even feel bad.

I was fortunate never to have had the severe stomach pain that many of you have when glutened. At my worst, I had fatigue, malnutrition, vitamin deficiencies, ataxia and the worst was unannounced acid bathroom runs that kept me house bound for two months.

My guess is that at this point my system is healed and it would take repetitive glutenings for me to have the obvious bathroom issues. I also am aware of the silent damage, but am almost tempted to do a challenge.

I am curious what others, who are healed, experience in this new stage for me.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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Wow! That's great....nice to hear good news


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Wow! I'm completely jealous. I've only been gluten free since January so I'm a long way from completely healed. Can I ask how long it took you to get to this stage? Something to look forward too. :)


Beth

Gluten free since January 2007.

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I've got a friend who doesn't react and she has cheated by eating chicken tenders and biscuits...still nothing. Now she wants to get an endoscopy to look at her villi to see if they really are getting damaged.

Maybe you could talk to a doctor about getting checked.


10-06 Diagnosed Urinary Tract Infection (Allergic to Cipro, Bactrim, Macrobid, Doxycycline, Monocycline, Penicillin) - This UTI is still present with no symptoms.

10-06 Diagnosed "Acid Reflux" (Nexium didn't work)

12-06 Endoscopy diagnosed Gastritis (Negative Bioposy)

12-06 Negative bloodwork for Celiac Disease, Diagnosed "Gastroparesis" - Started Zelnorm

1-07 Diagnosed "IBS-C" - Still taking Zelnorm

3-07 HIDA scan to check gallbladder which was fully functional.

3-07 Zelnorm taken off market, started Domperidone

4-21-07 Emergency Appendectomy (FUUUNN!)

7-24-07 Enterolab results came back positive

Gluten Free since that night....

...Still not feeling great.

"Don't expect constant success, but strive for constant growth."

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I have been gluten free for many years. I get just sick enough to know when I have ingested gluten. If this happens several days in a row I get sicker each day. Everyone is different.


Phyllis

Gluten Free - 30 years

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Please don't misunderstand my post. It certainly is not about bragging rights, far from it. It's more of a curiosity for me. When people who frequented this site feel better and confident in the diet they move on and no longer need the information and support found here. It isn't often that we hear from people who have successfully eliminated their symptoms by diet controll after several years and have no celiac issues.

I was terribly sick for the most of my first year after being diagnosed. I never thought that I would regain the mental agility that I had lost. It left me with severe muscle atrophy which I am working on now. I have jeans ranging from size 2 - 14 :o (5'8")

I know that over these years I have eaten unsuspected gluten and certainly some cross contamination and yet, I don't react. Would it take repetitive exposure to react? This I assume to be true and would like to talk to others like me. - if they are still around.

As I find myself in new uncharted ground, if it serves as an inspiration for those struggling now, I hope so. I am fully aware that Celiac can "morph" into something more serious in the years to come. That is something that I rather expect. Guess, I'll take one day at a time.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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I have been gluten-free for almost two years. I know I'm getting CC'd occasionally, but I rarely have more than a passing fatigue, which sometimes I don't even notice until it's passed. I did get CC'd for sure several days in a row and the full depression and fatigue came back for several days.

I have no interest in ever doing a challenge. I don't want to waste another two years getting back to this point for the sake of a little more information.

I don't care what my body would do, if... I care what it's doing now.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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My reactions to gluten aren't too bad now, either. I get some mild stomach pain, some fatigue and joint pain, but nothing that really interrupts my life. I have a hard time knowing if I got glutened or if I'm just having an upset stomach day.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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This is really encouraging! I'm going to email this thread to my mom. She was diagnosed last December, and is still having problems often. :(


-Sarah

--Son, Lucas, age 7. Gluten-free since May 2007

--Son, Ezra, age 5. Gluten-free 10/13/07. Bipolar tendencies, massively improved on gluten-free diet! He's also allergic to a jillion antibiotics.

--My mother has Celiac Disease, dx'ed by Positive Blood Tests and Biopsy. Diagnosed Sarcoidosis 6/08.

--Myself, Gluten-free since 8/07

Time heals all hurt of heart... but time must be won.

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My doctor (Alessio Fasano - UM Center for Celiac Research) said that I should come back once a year to meet with him and have my blood work done. He said that if my blood work comes back normal then we will know that I am not accidentally ingesting gluten. (Hopefully I am relaying the information correctly). Maybe a simple blood test would answer your question? That way you could have some piece of mind that you are following the diet.

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I am not sure how to respond to this thread. I do believe that I have my celiac disease under control, having said that, do I think I am healed? No, I don't. I am not sure my tummy will ever totally recover. After getting the gluten out of the way, then the soy became a problem, then corn, then nightshades, it's like a neverending story for me. I find that my tummy now seems to be on an even keel most of the time and I very rarely have any pain. Occasionally I will have constipation, which is caused by a soy or corn slip, usually at my support meeting. It's strange, I forget when I am there, not everyone is soy and corn intolerant like me, I just think it's a celiac support meeting so everything is safe!!! ;) Sometimes a lotion will bother me and I break out in a rash, or a food will cause a rash and I wonder what damage is going on inside. I am still trying to get thyroid issues all figured out, throw in a hysterectomy and the mix has been very confusing for me.

My tummy is 85% better than it was 7 yrs ago. That I know, without a doubt. Yet all the other intolerance's are still a problem and adjusting is a constant battle sometimes.

I am so happy you are doing so well, I think it's great. My sister is like you and she feels great.


Deb

Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

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I, too, had very bad reactions in the first year, to even a speck of gluten. SEVERE diarrhea about 12 hours later, for half the day, and horrible abdominal cramping, fatique, insomnia, all of the good stuff.

Now - nothing happens intestinally. NOTHING! I even intentionally cheated three times recently in one week - never mind - :ph34r: and had NO intestinal response. So....I DO think our intestines heal......

HOWEVER - - within a week after my cheating, I slipped into an all-too-familiar depressive state. It wasn't horrendous and wasn't as bad as it CAN get.....but very distinctly noticeable and terrible. Lasted about two weeks.

Despite the fact that gluten will re-damage our healed villi - reason alone not to cheat - - the depression, for me, is the reason I will not ingest gluten knowingly again!


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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I get sick quite frequently, only occurs when i eat out...i pretty much had to cut out bone fish, because i get sick everytime i go there, pf changs, and other restuarants. I seem to do good at mexican restuarants just ordering chx dishes and beans no rice. I can't eat anything processed unless it has only been processed on gluten free machinery, and i can not eat corn fed and grain fed beef, i can only eat grass fed beef. The best thing that works for me is salmon and cheese. I have a rash on my back right now because i added corn back into my diet a month ago and now it is out of my diet again. So no corn, eggs, or gluten for me.

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It's good to know that others, gluten free for two years or so, share a similar experience. And it is hopeful also for those headed in that direction. It seems from the posts from Jestgar, kbtoyssini, Phyllis who has more years under her belt than anyone and Susie that the responses to gluten are far less severe, if not at all. Deb, I understand that you have several food intolerances which would complicate healing. But, I am glad that you are doing much better now.

This all seems contrary to the fact that some people respond in a greater severity to gluten once it has been removed from their system. It could be that this is during the healing process. Then again, every one is different.

For those that are struggling now, it's good to know that there is a light at the end of the tunnel. After a few years you no longer feel that the diet is an effort and it becomes second nature and being ill becomes a memory.

It would be good to hear from some others too. :)


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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I have been gluten-free 5 years as of the 20th of this month. I don't get as sick as I did during the first year but it still hits me very hard. I do seem to recover more quickly than I did at first though. My DH is a different story though, after about a year and a half gluten free my lesions lessoned a lot. At first even a small amount would cause breakouts on my scalp and extremities that would take at times months to heal but now I get at most one little tiny blister that heals quickly and leaves much less of a scar. An added side effect for me is that I haven't had a cold or the sniffles or anything viral now in over 4 years. This leads me to think that my immune system still remains in hyperdrive.

My DD however after about 2 years gluten free got herself rebiopsied by a different doctor and had her celiac diagnosis withdrawn. She has now been back on gluten for a couple of years and is just now starting to get symptoms again. I think sometimes once we get healed it can take some time for the body to start reacting again, or maybe I should say reacting in a way that is noticeable. I believe she is still doing damage just like a person who had a 'silent' presentation to begin with. Time will tell and as we know you can't tell a young adult anything, you just get to worry.

In a way I envy folks who don't have a severe reaction, but in a way I don't. My sensitivity makes me kind of the gluten or CC 'tester', I'd rather give someone else the job. :blink:


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I've been gluten-free for over two years now. Other food sensitivities play into the whole body-reaction thing, but a gluten response IS different enough I can tell if it's gluten or if it's something else.

Gluten CC for me now is much much less of a reaction than before. It follows the same routine, but is much less severe and more short lived. First stomach cramps, then D, followed by fatigue and brain fog. The last time I was CC's, a week ago, the D lasted only a couple of hours, and by the next morning I was feeling fine and brain was clear again. (During the first few months of going gluten-free, the CC reaction would last a week and a half, the first few days with D, then lingering fatigue).

So I assume I'm healing, but not completely healed. I hardly ever get gluten contamination, mostly becuase I cook everything I eat, live in a gluten-free environment, and seldom eat out and then only to three restaurants that have been safe for me, at least so far.

Everyone's different, though. I have a great deal of sympathy for those who have more severe reactions to gluten than they had before going gluten-free.


Valda

Enterolab results: ...two genes for gluten intolerance ...casein intolerance

other sensitivities: corn, eggs, soy, potato, tapioca

Hypoglycemic

Sensitivity to high EMFs [electromagnetic frequency] (limits my time in front of the computer)

Living a healthier, happier life.

-------------------------------------------------------------------------------------------------------------------

If I take the wings of the morning, and dwell in the uttermost parts of the sea, even there shall thy hand lead me, and thy right hand shall hold me.Psalm 139: 9,10

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Momma Goose--thanks for this topic :)

I've been gluten-free since June 2, 2005--almost 2 1/2 years (wow...).

For the first 18 months or so, the slightest bit of cross contamination would cause me to be sick to my stomach with D and nausea for at least a week. I would be tired and anxious--not at all fun to be around. It would often take another couple of weeks to get completely back to "normal".

I have other food sensitivites, so identifying those and eliminating them has helped my recovery. I also noticed a big improvement after a course of antibiotics. The last thing I have done is to begin taking calcium carbonate with meals.

In the last few months, I feel better than I have in many years. I still avoid restaurants and the other foods I'm intolerant to--but it's become second nature to me.

I don't consider myself healed, but I do think my intestine has healed to the point that I am successfully managing my disease. For all those reading this to see what may lie ahead, there is light at the end of the tunnel. This seems to affect each person a little differently, so be in tune with your body and don't give up--it will get better :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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I never had stomach issues with gluten until I tried to go gluten-free. That first summer I had more GI problems than ever, probably due to cc. My symptoms are depression, fatigue, and irritability. I almost never eat out because it seems like at least half the time that I do, I notice that those come back and last for several weeks. It just isn't worth it. I have been too scared to actually do a real challenge.

Except when I eat out, I consider myself completely cured. I do think my symptoms from eating out are less severe than they used to be. I can now function but just don't feel as good as I do when I don't eat out.

I have been gluten-free for 18 months.


Karen

gluten free 4/06

casein free 7/06

DQ1, DQ8

Daughter (11) gluten free 5/06, casein free 6/06

Daughter (9) gluten free 3/06, casein free 7/06, soy free, trying peanut free

vegetarian

gluten lite on and off since 1999

All dx'ed by Enterolab

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Hi everyone.

I have been gluten free since Aug 2006, but I wonder sometimes when my stomach sticks out (bloated) slight Big D you know just a little loose. Maybe there is something I am missing. Some days are great then I some are bad. Can we really ever be healed ? I personally don't think so, but maybe. My body always feels bad somewhere. I have 4 surgeries on my right shoulder (may 2007) this year was the last and I still can't raise my arm. So this also makes me feel we never can heal. Just wanted to ad my 2 cents worth. :rolleyes:


Diagnosed Celiac Sprue Disease August, 02, 2006

Blood test, No Biopsy

IgA off the scale 44 now 3

IgG 56

(tTG) IgA 25 now 2

(tTG) IgG 1 now 1

now border line low iron 10

Gluten Free since August, 02, 2007

Diagnosed with Osteoporosis November 2006

As of Jan 2007 all numbers looking good

As of Feb 2007 no more Pork, having Allergic reactions

Lactose Intolerence

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Hi Rebecca,

I'm sorry you're still in pain. The D and bloat makes me think you may have other intolerances.....dairy is the first one I think of - are you still on dairy?

I DO think we can be healed, in that our villi can significantly or completely restore - however, I do NOT think we can be CURED!! We are still Celiacs and need to be on this diet forever.

I never even CARED about my intestinal problems before dx, and hardly noticed them. They were in no way severe - mostly constipation and hardly any D. Um, sorry - gross here - but I had striped poops - which I later learned was undigested fat. And....this is the really gross part - - sometimes just streams of brown mucus. :ph34r: For like three or four years - until finally I asked my mom one day if she had that - and she was aghast! Nothing horribly painful, ever.

Removing gluten and THEN being glutened was the most unbelievable pain I'd ever experienced in my abdomen (except appendix nearly bursting in 2001)! There is now a kicked-in-the-gut feeling from glutening (or too much popcorn) that I only realized, after gluten removal, that I'd had with me most of the time for the past few years before dx...in other words, only when the pain completely went away did I realize that it had been with me for quite a while, but it really was no big deal, just a dull ache. In fact, I was so depressed, that I remember I used to WISH that it was ovarian cancer. Yup, that's how bad things were in my brain. :blink:

Patti - so nice to hear you're doing better than ever. :)


SUSIE

Diagnosed January 2006

"I like nonsense. It wakes up the brain cells." ~Dr. Seuss

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I have been gluten-free for over seven years. The evidence would seem to show that my intestine has healed, but there are ongoing issues stemming from years of malnutrition. My bones are those of someone 30 years older than I am, and are showing almost no sign of strengthening. My current family doctor says that regrowth is unlikely at my age (53), and the best we can expect is that they won't get any worse.

I do react to gluten, although I am sure that there is a threshold below which there is no effect. My home is not gluten-free. The stores I usually shop at are not gluten-free. Most of the foods that I buy are made in facilities that are not completely gluten-free. If you have read enough of my posts, you know that I do not believe that any facility can truly be certified to be 100% gluten-free.

It has been about a year since I had a detectable gluten incident, and recent retesting showed no evidence of celiac disease. I know that a test which is not positive is not the same as a test which is negative. I also understand that there is no such thing as a truly negative result--scientifically it is not possible to prove a negative; you can only draw an educated inference from the lack of positive evidence.

To the comment about newbies who come here, learn, and leave, I would say this. I had been on the diet for four years when I found this forum. I was looking for information that would help me find places to eat in New York City (midtown Manhattan) where I had to spend a week on business. Search found what I needed to know, here. I lurked for months before joining the board.

By then, I did not have many questions, but wanted to share what I knew so I could help others. That is still the main reason that I am here. I have many friends on this board, and am happy to be part of the community here.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I will have been gluten-free for nine months next week and I was just commenting to my DH yesterday that when I get gluten accidentally (eating out, usually) I don't really get sick, or as sick as I did right after diagnosis.

At about 3 weeks into gluten free, I noticed that I reacted to everything- spatulas, colanders, wood spoons etc., just as people here said I would. And any amount of gluten would make me terribly sick. Now, after eating out occasionally, I'll have a few tummy rumbles and some burping and gas, and maybe a little D. Nothing that makes me need to go to bed, as I did earlier. Very few other symptoms, occasionally a mouth ulcer.

I think my quick recovery (if you can call it that) is due to the fact that my villi were not damaged- I "only" had damage at the cellular level. And as sick as I was, I really have sympathy for those of you with totally destroyed villi and major symptoms. And thanks to the nice, knowledgeable people on this board, I eliminated most dairy after diagnosis, and that helped too, I believe.

If I never had to (or wanted to) eat out I would probably never get gluten. And I hope what little I have isn't doing any long-term damage. If they eventually market that drug that they're testing, I'll take that before eating out.

~Laura


Diagnosed by biopsy 2/12/07. Negative blood tests. Gluten-free (except for accidents) since 2/15/07. DQ2.5 (HLA DQA1*05:DQB1*0201)

Son, age 18, previously delayed growth 3rd percentile weight, 25th percentile height (5'3" at age 15). Negative blood work. Endoscopy declined. Enterolab positive 3/12/08. Gene results: HLA-DQB1 Molecular analysis, Allele 1 0201 HLA-DQB1 Molecular analysis, Allele 2 0503 Serologic equivalent: HLA-DQ 2,1(Subtype 2,5) Went gluten-free, casein-free 3/15/08. Now 6'2" (Over six feet!) and doing great.

"Great difficulties may be surmounted by patience and perseverance." Abigail Adams (1744-1818) 2nd First Lady of the United States

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I think it's reasonable to assume that how quickly we heal from celiac disease is going to depend on things like age, general health and how long we were sick before being diagnosed. If you're 18 and got diagnosed quickly, you're much more likely to heal quickly than someone who is 50 and was sick for 15 years before being diagnosed.

I don't trust doctors and anything they say about how long it takes to heal is pure speculation and probably nonsense. Plus, many of us who were sick for years have complications stemming from years of malnutrition and organ damage resulting from celiac.

The one thing we know for sure is that there is no 'cure' for celiac. Most people seem to become MORE sensitive to gluten after we go gluten-free. For those of you who have diminished symptoms when you are glutened, remember that there are some people who are diagnosed with celiac who have no symptoms whatsoever. Just because your D isn't as severe as it used to be, doesn't mean that nasty things aren't happening in your intestines. Lots of us never had D from celiac, but we were still pretty damned sick!

Don't eat gluten. Remember: Wheat is murder!

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Lisa this is great news.

I can honestly say since being gluten free I have noticed I do not get even small colds. Every now and again I can the stomach upset which travels through my workplace but when John gets sick, I do not seem to pick it up.


~~~~Gluten Free since 9/2004~~~~~~

Friends may come and go but Sillies are Forever!!!!!!!

36_22_10[1].gif

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I think the bottom line is that even if it takes repeated glutenings to get as bad as it was it took most of us over a year of pain to get to this stage.

If you don't get an immediate strong response then keep going the point at which you do is going to be when you have done enough damage.

Even worse, that damage isn't always reversible and the process is a bit of a cascade effect. We get glutened and damage our ability to adsorb nutrients and put a huge stress on our immune system, various organs (like the thyroid) etc. and all of this means it is harder to get back. We basically wear the bodies ability to heal down ...

The idea of a gluten challenge is to me anathema. It is by design to damage the body to a point it can be observed by a fairly chance based procedure (in terms of sampling) .. if we get a negative what to do? Do we keep going and see if we can damage it enough the next endoscopy finds damage?

Also it is worth remembering many 'symptoms' are easily masked. We can put the odd D down to something dodgy, we can explain dark moods or stomach pain various ways and if it is passing dismiss the gluten but it doesn't mean it wasn't gluten. Remember its easy to believe what you WANT to believe.


Fere libenter homines id quod volunt credunt. (JC, De Bello Gallico Liber III/XVIII)

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