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After 7 Years, I Think I Got It

richarda83

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richarda83 Newbie
richarda83
Posted

So after 7 years of going to doctor to specialists to surgeon, somehow I dont know how i missed this. As I am sure many of you have experienced, in your pursuit to discover the cause of your ailments, you get very excited when you THINK you found something, and then you look silly. At many points I have convinced myself that I have AIDs, lupus, sinusitis, gastritis, in need of lymph gland cleansing, had a larger than normal lymph node removed from my neck, had my deviated septum fixed to clear my sinuses, and rounds of antibiotics, antacids, anti fungal, etc.etc.

So fastforward to today, after NUMEROUS jobs, dropping out of college, failed relationships, and a quality of life my 90 year old grandman would feel sorry for, I believe I have found my ailment. I am willing to look silly, because never before have I realised that after I ate a piece of bread the pain in my stomach, irritability, eyes watering, hands and cold and whole body pretty much freezing, that I could be allergic to gluten. So i googled every symptom I suffer from and continued it with celiac disease and COUNTLESS search results came back. I have swollen lymph nodes that were biopsied non cancerous that have fluctuated in size minimally but emit sharp pains via the stomach. I have had sharp pains throughout my body, foggyness in my head, depression, SEVERE anxiety, hair loss, and paleness. I did have allergy testing done but I dont believe I ever had a gluten test done, and by the looks of it, a negative test is meaningless. All I know is after I ate that piece of plane bread today on an empty stomach, I felt like crap, and still feel tired. I just wanted to say to everyone that while I will not confirm my diagnosis until it is professionally given, I am very quite certain I will be a future member. While I do not look forward to a restricted diet for the rest of my life, I would give anything to finally end the 7 year misery that I have endured. I will be going in for testing tomorrow, and I actually hope I get the answer im looking for. Thanks!

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Bubba's Mom Enthusiast
Bubba's Mom
Posted

It sure looks like you might be one of us?

Good luck with your testing. I hope you get some answers.

Be aware that 20-30% of us test negative in our blood work, but do in fact, have Celiac. There's also non Celiac gluten intolerance, so once your testing is done try gluten-free 100% and see how you do?

kittty Contributor
kittty
Posted

This sounds cruel, but I hope you do test positive for celiac. It's just incredible to have answers, after years of beating your head against a wall. I was also at the doctors office constantly, getting no solutions, being sent to random specialists, and being prescribed random medications with no relief. I still don't feel completely well five months later, but I feel so much better! Nothing has ever made me feel better before, and it's a long road of recovery ahead, but making progress feels awesome! I hope you start feeling better soon, and especially hope you get some relief for that anxiety - that symptom is my nemesis. I learned to deal with the pain, the diarrhea, the brain fog, but I NEVER could learn to handle the anxiety.

Good luck!

GFinDC Veteran
GFinDC
Posted

HI,

It sounds lie you could be one of us. Do get all the testing done that you want before going gluten-free. The tests will not work if you have stoped eating gluten before hand.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

https://www.celiac.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

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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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