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Newly Diagnoised With Gluten Intolerance

SweetAmber32

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SweetAmber32 Apprentice
SweetAmber32
Posted

I am newly diagnoised into this wrold of Celiac Disease/ Gluten Intolerance. Unfortunantly I was not able to be tested as I have no health insurance. I have been out of work for a year due to Fibromyalgia and maybe even Gluten Intolerance. I found out of my intolerance due to eating Seitan. For those who don't know what that is, it is a "meatless" gluten product made for vegetarians. Talk about feeling miserable. Hives, burning, severe lethargy, etc. I made a Doctors appt, that got canceled due to snow, so a new appt was made. To prepare for this appt. I purposely ate seitan again. I did not want my Doctor thinking I was being a hypochondriac. Luckily he did not. He took one look at me and said I was Gluten Intolerant. I even had breathing difficulties later that night. I have been eating gluten/ wheat free for nearly a month now and I feel great. I told my mother recently, that I must have had this since I was kid as I always have had stomach problems. She took me to the Doctor when I was a kid, but the tests were negative. Then about 3-4 years ago I woke up one day and could not button nor zip my pants. I had to hold by pants up by safety pins. In a month my weight went up by 20lbs and I started heart burn and acid reflux. I was diagnoised with having acid reflux, but the meds never worked and even when i avoided foods I stil had heart burn and acid flux. My weight has gone up by nearly 60 lbs since that day. And the bloating was bad. I even develped severe IBS. But since I changed my diet and I try to watch it like a hawk, my IBS is gone, the bloating gone, the heart burn and acid reflux gone, my weight is going down, my clothes are getting bigger. Even some of my aches and pains associated with Fibromayalgia ( I was diagnoised with this in August) have lessened some. I have not felt this great, in I don't know how long. I can even breathe while sleeping on my back and right side, which I have not been able to due for the last few years. I can tell that alot of those on this forum, that they consider their illnesses a nightmare. But I see it differently. I've been given a gift. I have been given a new lease on life. :D

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Lisa Mentor
Lisa
Posted

Welcome! You have found a great place. If you have any questions, please feel free to ask.

lizard00 Enthusiast
lizard00
Posted

Welcome to the Forum and the world of better health!!!!

I've been given a gift. I have been given a new lease on life.

I completely agree with you!! Before I discovered my intolerance to gluten, my life was going from bad to worse. And now, I have a few days where I get bummed out that I can't eat a brownie or pizza, but those days are getting less and less as I feel better and better. I am thankful that my illness can be controlled by food instead of some pill I would have to take for the rest of my life and worry about crazy side effects!!!

YoloGx Rookie
YoloGx
Posted
Welcome to the Forum and the world of better health!!!!

I completely agree with you!! Before I discovered my intolerance to gluten, my life was going from bad to worse. And now, I have a few days where I get bummed out that I can't eat a brownie or pizza, but those days are getting less and less as I feel better and better. I am thankful that my illness can be controlled by food instead of some pill I would have to take for the rest of my life and worry about crazy side effects!!!

Here here!

By the way I was diagnosed as an infant but reintroduced to grains when I was 4. It was downhill all the way. Doctors just didn't get it back then and are only starting to now. I am glad your doc and you figured this out. I had to do it on my own like so many others.

Yolo

Glutina Rookie
Glutina
Posted

hello from another newbie in the gluten-free way of life!

I just wanted to say that your positive attitude towards your diagnosis will certainly help in your return to health...I know that by viewing my diagnosis as "hey--at least now I know what to do to get healthy" rather than "oh poor me, I have to change my life now", I have seen marked improvements in my health even in the month I have been gluten free. (And when there was a slip-up, BOY was I reminded with a vengeance what terrible things I used to live with on a regular basis!)

Bye for now, and welcome!

-Glutina ;)

Kritter Rookie
Kritter
Posted

Welcome! Nice to meet you! I'm pretty new here as well. I'm only 3 weeks gluten-free, but like you, I have a whole new outlook on life! I feel hopeful and encouraged for the first time in a long while and the people here are great! Something you said in your very first post has already been an inspiration to someone else (me) so that should also make you feel good! One of my most vexing and hard to figure out problems is that of being unable to breath at night when laying flat. Your testimony that you are improving in that regard gives me hope!! Thanks!

Kritter

sunshine3230 Newbie
sunshine3230
Posted
Welcome! Nice to meet you! I'm pretty new here as well. I'm only 3 weeks gluten-free, but like you, I have a whole new outlook on life! I feel hopeful and encouraged for the first time in a long while and the people here are great! Something you said in your very first post has already been an inspiration to someone else (me) so that should also make you feel good! One of my most vexing and hard to figure out problems is that of being unable to breath at night when laying flat. Your testimony that you are improving in that regard gives me hope!! Thanks!

Kritter

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sunshine3230 Newbie
sunshine3230
Posted

Hey - just diagnosed last week. Wish I had not put up with years and years of feeling miserable thinking it was just "normal" for my body. Just starting with gluten-free and for me it will just be making sure I know what to eat & what not to eat I suppose. But all of these success stories definitely give me hope. I don't want to get too excited too soon, but after only 20 or so hrs gluten-free, my tummy feels completely different and has stopped that incessant gurgling/churning sensation. Am hoping my sinus headaches go down in number too as I have been reading many celiacs whose headaches have gone away since going gluten-free. Cheers all!

ksymonds84 Enthusiast
ksymonds84
Posted

. I did not want my Doctor thinking I was being a hypochondriac. Luckily he did not. He took one look at me and said I was Gluten Intolerant.

Welcome to the board! Sounds like you have a very smart doctor, your very lucky!

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    • Jmartes71
      Second chance

      By Jmartes71 · Posted

      Thats the thing, diagnosed in 1994 before foods eliminated celiac by biopsy colonoscopy at Kaiser in Santa Clara  now condo's but it has to be somewhere in medical land.1999 got married, moved, changed doctor's was with former for 25 years told him I waz celiac and that.Fast forward to last year.i googled celiac specialist and what popped up was a former well known heard of hospital. I thought I would get answers to be put through unnecessary colonoscopy KNOWING im glutenfree and she wasn't listening to me for help rather than screening me for celiac! Im already diagnosed seeking medical help.I did all the appointments ask from her and when I wanted my records se t to my pcp, thats when the with holding my records when I repeatedly messaged, it was down played the seriousness and I was labeled unruly when I asked why am I going through all this when its the celiac name that IS what my issue and All my ailments surrounding it related. I am dea6eoth the autoimmune part though my blood work is supposedly fabulous. Im sibo positive,HLA-DQ2 positive, dealing with skin, eye and now ms.I was employed as a bus driver making good money, I loved it for the few years my body let me do until I was yet again fired.i went to seek medical help because my body isn't well just to be made a disability chaser. Im exhausted,glutenfree, no lawyer will help and disability is in limbo thanks to the lax on my health from the fabulous none celiac Google bay area dr snd team. Its not right.
    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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    • cristiana
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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