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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
      Small Bowel Resection 12 inches

      By trents · Posted

      You might consider asking for a referral to a RD (Registered Dietician) to help with food choices and planning a diet. Even apart from any gluten issues, you will likely find there are some foods you need to avoid because of the shorter bowel but you may also find that your system may make adjustments over time and that symptoms may improve.
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      I wish Dr’s would have these discussions with their patients. So frustrating but will continue to do research. Absolutely love this website. I will post any updates on my testing and results.  Thank you
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      Losing 12" of your small bowel is going to present challenges for you in nutritional uptake because you are losing a significant amount of nutritional absorption surface area. You will need to focus on consuming foods that are nutritionally dense and also probably look at some good supplements. If indeed you are having issues with gluten you will need to educate yourself as to how gluten is hidden in the food supply. There's more to it than just avoiding the major sources of gluten like bread and pasta. It is hidden in so many things you would never expect to find it in like canned tomato soup and soy sauce just to name a few. It can be in pills and medications.  Also, your "yellow diarrhea, constipation and bloating" though these are classic signs of a gluten disorder, could also be related to the post surgical shorter length of your small bowel causing incomplete processing/digestion of food.
    • Ello
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      Yes this information helps. I will continue to be pro active with this issues I am having. More testing to be done. Thank you so much for your response. 
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