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felps89

Ncgi And Its Symptoms

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I did the blood test and the biopsy and both came back negative. Well Im gonna tell my history here to see if someone can help me, here it goes::

 

 

When I was a kid I had a lot of infections in the throat, it was out of normal, in a year I would get sick 6-9 times and I had a very nasty tingling in my hands, that was ackward and made me not having a good motor coordination, since my hands were very shaken. When I was in the beginning of school, as a child, my school used to give us small breads in the end of school (brazilian thing, dont ask haha) and by that time I started having a really bad fog mind, that I couldnt think properly and a really nasty itch on my nose. As soon as I changed the school the symptons disappear, I could think properly and the itchness was gone, since I wasnt used to eat gluten stuff in my home. By this time, the throat infection got better too. But everytime my mom used to make home pizza or I ate white bread i felt sick, with nausea and headache (I notice that white bread is worse for me than bread roll), but I didnt mind much. When I was on 4th grade, I went to a school in the mornings and then I came back eating bread regularly and I even used to take white bread to eat between classes, and it was in this year that my gut problems started::: I started to have a really nasty problem with lactose, I couldnt eat anything with milk and even foods that contain milk, I went to the doctor and he said it was lactose intolerance that it was commom and i should avoid it (I never heard about gluten in my life and I didnt do any tests by this time). This year, my throat infections came back very strong and I had to undergo a surgery to take my tonsils out. I moved again from school in the afternoons and then I stopped eating bread (I only used to eat bread because of school in the morning). Then I started college, in another state very distance from my home, and as a college student that doesnt know how to cook well, I starting to consume a lot of products with gluten, breads, pasta, cakes. In my first term, I felt a little bit of bloating, I felt fatigued all the time, and my hair started to fall out, a lot. I started to have sinus infections, one after another, and I did a lot of surgeries in the nose to avoid further sinus infections, cause it was one after another. By this time, my fatigued was getting worse and I just wanted to sleep, I have to strengh to do anything, when I went to the gym (something that I used to do since 14yo) I notice that EVERYTIME i tried to started doing sit-ups, my abdominal muscles started to cramping, and it was terrible because of the pain of the muscle cramps. I let it go, and got out of the gym. On my 4th term, I had a huge nasal polyp, that the doctor said I had to undergo surgery, but then, my dad went to visit me to take care of me, and he started cooking and I stopped eating gluten (now I understand this) and the polyp got out, just like magic, 1 week before my surgery), i thought that very strange, but I didnt understand and the doctors didnt have any answers. When I started my 6th term, I ate a lot of breads, 5 to 6 in a day, because I didnt have any time to cook (my major in college is insane) and by the end of that semester, I started to having again those muscle cramps, hipotension, I 3 throat infections, one after another (the nightmare was back) and even the little tonsile tissue left from the surgery had hypertrophiate. the situation got worse and worse, I started to feel my belly stiff, indigestion, bloating, and a lot of pain in my belly. I did every possible test to try to diagnose it and during a trip to my college from vacation, I was fasting and I stopped in the gas station and ate a flour croissant, by the time I got in my college town, I had to be admitted to the hospital because of the pain and nausea. I did a lot of tests, and nothing. I started taking medicines for the IBS, but the pain got even worse and I started losing a LOT of weight, 15 kg in 2 weeks, even though I was eating very well. I started doing a gluten-free diet on my own, and in the 3rd day, My hands stopped shaking for the first time in my life. The nausea stopped and I felt a lot better. In a week of gluten free, i did the blood test and the biopsy and both came back negative. The doctor said I Didnt have celiacs and I could eat bread back, but I didnt. In 3 months my lactose intolerance was completely gone. I started though having malnutrition problems with my eyes, dry eyes, photophobia, dermatitis because of dry skin, foliculitis, joint pains that got a lot better when I started taking supplements and eating milk again.  I got better the weight I had lost too. The problem is, my family has got this problem too. My sister has always complained of pain in the abdomen, she has to be adimitted in the hospital when she eats lots of gluten food and she had 3 miscarriages. My niece and nephew both have lactose intolerance, just like I had when I was a child, but they did the celiac panel and came back negative. I had an uncle that died from intestinal cancer. My question is:: CAN NON CELIAC GLUTEN SENSITIVITY cause lactose intolerance and malnourishment, because both, mine and my family panel came back negative?? my bypsy came with an inespecific inflammation that the doctor said "it was nothing", it had no atrophy or anything. Sorry for the big post. thank you guys so much for the help and sorry if I wrote something wrong, english is not my first language. Felps.

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Hi Felps,

 

NCGI shouldn't cause lactose intolerance and malnourishment.  At least as far is known now.  Inflammation is not nothing, regardless of what your doctor said.  Did you get a copy of the tests they did and the results?  Someone might be able to interpret them if you post them here.

 

A gene test for celiac genes might be helpful also.

 

if you weren't eating gluten (wheat, rye, barley) before you had the celiac tests the tests are no good.

 

Celiac is not always easy to diagnose, and sometimes doctors don;t do all the tests needed.

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Maybe it's not lactose intolerance, but a milk allergy (casein and whey).  That can cause inflammation -- that and many other foods that you might be intolerant to. 

 

GFinDC is right.  You should have all copies of all your testing.  There are many here who are good at interpreting lab results.

 

In any case, consider going gluten free if you can't get any results or support from your doctors.  My husband did 12 years ago at the recommendation of his GP and my allergist.  He stopped snoring, nor aches or pains in this muscles or joints, and no more sinus infections.  He feels great!  

 

Good luck!  

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I haven't been tested for celicac, but I know for a fact that I'm gluten intolerant. There's just no question. Gluten for me drives me right into the ground. I can't lift my head off the pillow. I bloat terribly (have looked "pregnant" from the age of 11 even when 95 pounds...only realizing the tie-in now; just thought I had a "big belly"), other parts of my body bloat (face, hands, wrists, ankles), I get what I'm fairly sure is DH - and even if not, I get a terrible, burning, itchy rash, my eyes blur, I get migraines, the list goes on.

 

To me, whether or not I have celiac, it's all the same. CAN'T eat gluten...and that's that. I was in denial for a few years after discovering this tie-in and have been miserable and going downhill even more ever since. (Yes, I've had my thyroid tested and am in fact hypothyroid; I am medicated for this and get re-tested frequently.)

 

To me, at least, gluten intolerance has only gotten worse as I've gotten older.

 

I also have just recently discovered I'm lactose intolerant. Tried Chex cereal last night with just a little bit of milk, and suffered horribly all the way through the next day.

 

Even if you haven't had a positive test for celiac, if you're simply considered NCGI, for me at least it's all the one functionally; it doesn't matter whether I get a positive celiac test or not, I CAN'T function when eating gluten. Period.

 

I don't know if that helps or not.

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