So Frustrated With Blood Tests And Scopes

[lizzybeth]

Hi everyone, my name is elizabeth and I am 24 years old. Ever since I was a baby i have had stomach issues. my first being projectile vomiting after having milk. my mom changed me over to soy formula and i was fine with that. then as i grew older, i started to have diarrhea practically everyday. I stayed home from school on numerous occasions because I was so sick. I have also been diagnosed with Tourette Syndrome, OCD, Anxiety, simple partial seizures, pcos and have very bad eczema all over my hands, face and feet. my eczema is so bad that i have to wear socks right now, and the weather has been very hot in canada lately. it's just awful. I was hospitalized 5 years ago, because of rectal bleeding, and i couldn't stop having diarrhea. the dr. said the bleeding was from hemmroids(don't know how to spell) and i had ibs. I had a colonoscopy and endoscopy at this time. all was normal. i then had another colonoscopy and endoscopy 3 years ago, because i couldn't hold anything down. i was throwing up all day long and couldn't stop going to the bathroom. i had to run in stores, and ask to use the staff bathroom. i hate to admit it, but i've even had a few accidents because my stomach was so sour. and i'm 24 years old. it shouldn't be like this. so i've also had my gallbladder out, and another 2 scopes in 2011. all was normal, again was diagnosed with IBS. I asked for the full report from my last scope, and it said only a single biopsy was taken. that's not good enough is it? i thought he should have taken more than that. I don't mean to keep rambling on. it's just that this has really started to affect my life. as for my other symptoms i have: low iron (anemic), GERD, extremely dry skin, dry scalp, diarrhea every morning before i even eat anything, also throughout the day, polycystic ovarian syndrome (haven't had a period since november 2011), being tested for epilepsy next month, weight gain (because i crave carbs so much), but when i eat carbs (prepackaged food) i get sick. I am very overweight for my height 5'2- 246 pounds. it's like my body is aging so fast. i feel like a very elderly women. everytime i get up i'm off the couch i'm moaning. Again sorry for the long post. i'm just at a loss. And i know IBS doesn't cause this much discomfort. Thanks for listening. Oh and i was sent for bloodwork yesterday. here is what i was tested for:

Gliadin IgA Antibodies

Gliadin IgG Antibodies

Transglutaminase IgA Ab

Are these the right tests for celiac?

Thanks so much for listening

[Takala]

Yes, those are the right tests for celiac, but it is not a full complete blood panel, there are a few more they could run. But it is a start.

Only a single biopsy from a scope of the small intestines, not good.

Other tests that they can run: an antibody test for thyroid auto immune disease, which is not the same as just checking the thyroid levels. In the auto immune version, the levels can actually spike UP and down so it appears that nothing is wrong.

The carb cravings are caused by malnutrition. You body will stop that, once you get on the proper type of diet for your genetics, and start taking the proper gluten free vitamins and minerals for your body. It does not have to be extra- fancy vitamins and minerals, just what you need, in gluten free form. This will be B complex vitamins, multivitamins, calcium such as calcium citrate or tricalcium phosphate (like in "Posture D") and magnesium and vitamin D. Don't take "Tums," which is calcium carbonate, because too much of that can cause other problems with the level of bicarbonate in the blood, and that might end up causing kidney/cystitis problems. (Tempted to make a racehorse joke here.... the Kentucky Derby winner's trainer got into trouble with bicarbs )

As for diet, this sounds counter- intuitive, but you may find yourself losing a lot of weight on a lower carb, higher protein and higher (good) fats diet, along with vegetables. Good fats include avocados, coconut oil and coconut milk, nuts, eggs, olive oil. There are diets such as Paleo and SCD (Specific Carbohydrate Diet) and variations on that, that will work well with PCOS. There are lots of gluten free foodie blogs where people have lots of ideas and recipes, and use ground up nuts and other alternative low carb flours to cook with.

As for exercise, do what you can, whenever you can. You have to work your upper body to prevent weight gain around the middle, so you can still do that type of exercise without having to pound on your feet. The key is consistency, doing a little every day, even for 5 to 10 minutes, later as you get into better physical condition, you can alternate between days of more and less.

[MitziG]

They left off a couple of very specific celiac tests, however, if the ones they did are even weakly positive for Celiac, then you have your answer. If they come back negative, you can request they also add a test for deamidated gluten peptides and endomysial antibodies. If it is still negative, you could submit to another endoscopy (this time with the recommended 8-16 biopsies!) Or you could decide to heck with drs and go gluten free. If you are gluten intolerant, but not celiac, that will never show on any test, regardless of how sick you get.

Whatever you decide, I would recommend you go on a gluten and casein free diet for a good 6 months to see if it helps. Just DON'T do it until all tests are done because it will cause a false negative.

All of your symptoms are likely caused by food intolerance, and gluten and casein are the two most common culprits. Please let us know how your tests come out!

[squirmingitch]

I agree with everyone else. i would add that the one biopsy they DID do especially doesn't count if they did NOT have it checked for celiac disease. The doc needs to specify he is looking for celiac disease.