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So Confused! Need Doctor?

LuvMoosic4life

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LuvMoosic4life Collaborator
LuvMoosic4life
Posted

Hi...

this is really lengthy, but I dunno how else to get my point/concern accross...

I have had digestive issues my whole life, but they started getting really bad around age 17. I am 22 now, and ever since then they just seemed to get progressivly worse. My symptoms are mostly severe gas/bloating and frequent constipation and then diarhea. My gas was so bad to the point where I would avoid social events and sometimes go w/o eating before going to school or going somewhere important because I knew I would be in such discomfort. I figured having gas is just the way I am since I grew up in a family where almost everyone, especailly my dad had the same problems... everyone in my family just told me, and still tells me it is normal, although by age 18 it started getting to the point where it was an everyday thing, I would eat, and then 1- 3 hours later I felt like I swallowed a balloon with a knife stuck in it. I had heartburn problems in high school and began to come down with viral infections that increasingly got worse, until in this passed year I got sick nearly 10 times and went on antibiotics 3 times. At one point I had pink eye, sinus infection and strepp throat all at the same time. Just recently I developed soars in my mouth and had a buring tounge for no appearent reason. I had my blood checked to find out I was borderline anemic ( I was very anemic around age 16/17 with my hemoglobin down to 8 and hospitalized b/c I kept passing out.) NO doctor or physician could ever give me an answer to my getting sick all the time, and the heartburn problems they were cluless about.

About a year ago I started linking my heartburn to eating bread, so I slowly cut it out of my diet as much as possible, it was something I would have every morning, either toast, or some type of whole wheat cereal. I was eating a lot of wheat pasta also and noticed that I was having diarhea on a regular basis, and even worse just before my menstrual cycles. I would go for days being constipated and then all of a sudden I couldn't leave the bathroom... I tried switching over to regular "white" pasta and it actually was having a worse effect on me.

By the time 2008 rolled around I stopped eating pasta, unless I knew I wasnt going anywhere. At the beginning of this year I started having bad reactions to beer. sometimes it would bother me, other times it wouldn't, but I never really had a problem before. I was talking to a friend about my symptoms and she suggested I may have gluten intolerance. So tried going compltely gluten free and I couldnt belive my symptoms nearly disapeared! My family thinks I'm making this all up and I've been doing a lot of research on celiacs, I'm almost convinced this may be what I have and what half the people in my family have...

...after eating gluten free for a couple weeks, I went home fore easter and ended up spending a whole day on the couch after eating pretzels, the discomfort was horrible!!!! I started getting a headace, something I rarely get anymore. I used to get migranes as a child after eating all the time, but never really thought anything of it....by the third day of being home I had painful gas, constipation, heartburn and a headace.

I know I have to be eating wheat before getting a blood test done for celiacs, but I'm having a hard time going back b/c I feel so good gluten free! Actually, I feel so good I almost am thinking I dont have a problem now and it is all in my head like my family is telling me. I dont have a doctor and am trying to find one. I just fear that he/she may not take me seriously or be knowledgable about this disease/intolerance. I went to the health center at my school and the nurse practitioner was trying to hide a smile when I explained to her my problems, and then I had to explain to her what celiacs is!!!!! and how its tested!!!!!

does anyone know anywhere to go in/near buffalo NY???? or is celiacs something that all doctors should be familar with???? I don't even know how i should approach a doctor with this. I dont know for sure I have celiacs, but I know for sure that wheat/gluten is a main source for my digestive problems. and even if I get tested and its negative, I'm still avoiding gluten. I just think I should get tested to find out if I have celiacs so that way I'll know how serious of a gluten free diet to follow.......

this is really stressing me out!

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tom Contributor
tom
Posted

Hoo-boy it IS a tough call for many - this part about eating gluten for a test when you already know it makes you sick.

Though it doesn't make a definitive dx for Celiac (no S, sorry if anyone's offended that I've again corrected someone new), the Enterolab tests can provide proof of a gluten problem & also whether you have the "usual" genes for celiac disease or Gluten Intolerance. (There is still much work to be done on the genetic side - a few wks ago, 7 more genes were reported to be involved)

It seems easy to see that much of your family would also benefit from a gluten-free diet - not that they'll ever believe it. <sigh>

LuvMoosic4life Collaborator
LuvMoosic4life
Posted
  • Author

yeah thats true. but I'm also worried I wont find a doctor that even knows that-ha

yeah, trying to explain a gluten free diet to my family= the response : what? thats insane. thres nohing you can eat!!! you're crazy......

plus they are almost all italian.......that doesnt help. :lol:

bareden Newbie
bareden
Posted

You can have a DNA test done to see if you have the gene for Celiac. It doesn't matter about your diet because it will show up anyway. I had all the classic blood test and showed Celiac but the doctor ordered the DNA to be 100%. It is hard to find a DR who is educated on this but you know your body better than anyone.

tom Contributor
tom
Posted
You can have a DNA test done to see if you have the gene for Celiac.

I don't recall the #s exactly but there are at least a few % of biopsy-confirmed celiacs w/ neither DQ2 nor DQ8.

nora-n Rookie
nora-n
Posted

About italian, there are so many Italians that are celiac , that all school children get screened for ceilac over there. It is really easy to get gluten-free food in Italy and they have gluten-free pasta and pizza etc.

Enterolab has a gene test too (you have to pay privately for all Enterolab tests I think) and they will tell you what the genes are, as opposed to most other labs wholy use the commercial test kit for DQ2 or DQ8.

There are many of us here with gluten-sensitive genes (like DQ5 or DQ7) but doctors usually say that only DQ2 or 8 can be celiac, but I find lots of medical articles out there that say otherwise. There are proven cleiacs out there with other genes.

nora

LuvMoosic4life Collaborator
LuvMoosic4life
Posted
  • Author

I heard that with the DNA test, it just shows wether or not you carry the gene for celiacs. Just because you have the gene doesnt mean you will get it...

....but I know less than people here :)

does anyone feel deyhdrated after eaten gluten?

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    • 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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