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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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    • Dr. Gunn
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      Exactly! Negative genetics can rule out celiac disease with close to 100% certainty. It takes tTg antibody testing and biopsy confirm the diagnosis in a genetically susceptible individual. 
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      By trents · Posted

      What Dr. Gunn states is essentially true. It is a rule out measure. But be aware that to possess either of the two primary genes that have been identified with celiac disease (or both) doesn't necessarily mean that you have or will develop celiac disease. Almost 40% of the general population carries one or both but only about 1% of the general population will develop active celiac disease. It remains latent until triggered by some stress event which may or may not occur. So, there is a genetic component to celiac disease but there is also an epigenetic component. 
    • Dr. Gunn
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      Have you had celiac genetic risk testing? A celiac genetic test is accurate with or without gluten in your diet. If you don't carry the celiac risk genes you can effectively rule out celiac disease for life. 
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      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
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