Hey guys!
About two years ago, at 23 years old, I got very sick, I could not eat a single thing without feeling pain and running to the bathroom. They thought I had Giardia, since I work with animals, because it was like my body was not absorbing a single thing. I lost 30lbs in two months, and then started vomiting and bloating and ended up in the ER. My family is fullllll of autoimmune disorders, and one being close to me, having Celiacs. It took 2/3 months and multiple doctors to even THINK about chrons or celiac which is wild all in its own. I was referred to a GI specialist, which turned out to be a waste of my time and money because she found nothing to be wrong after blood testing and endoscopy and colonoscopy. I was told well, all results are inconclusive, and that was it. Great. So, I decided to take a food test and cut out anything on my sensitive testing and ended up coming out of this okay after a couple more weeks of being in pain. SO here I am thinking, okay well if it isn't Celiac, I can have gluten every now and then and be okay. Now, if I even eat a little, I'm in the worst pain I have ever been in, feels like someone is stabbing and turning knives in my stomach, I have no energy and I'm on the verge of vomiting for days if not weeks. This had me reach out to my family member with it to discuss.
Now, keep in mind, I had cut out gluten because I had a strong feeling it was celiac disease, and had similar coming on and symptoms as my family member who has it. The doctor knew this. She told me since my bloodwork was negative for Celiacs she never took a Biopsy during my stomach scope, that she only took the biopsy for chrons. Crazy. Why did I pay for the stomach scope then?
My family member tells me, and research seems to be in line with this, that if you were to test positive for Celiac on a blood panel, you have to be currently eating gluten, and have been eating gluten for you to show the Biomarkers. So, when I had my blood drawn, it would have been months at this point with no gluten. That this is why so many people test negative on labs, and positive on biopsy (which she did not do, and knew I was gluten free at the time).
I am a little frustrated with healthcare, and seeking any guidance, and/or if anyone had experienced something like this. My family member said it took over 4 years to get a proper diagnosis, and my GP and online resources are saying 2 slices of bread DAILY for 6 weeks to get accurate bloodwork, or 2 slices of bread daily for 3 weeks for biopsy and then i would be out all the money again for another procedure. I am almost certain I have it, as there are other things, like the fact me and my family member who have it are the only people in my family under 5'7, and apparently it causes your growth to be stunted, and the fact we have the same symptoms, and it has gotten worse with each exposure. So, my question is, do you all think it is worth it to have the diagnosis, or to just assume, and continue a gluten free diet, with no cheating- and continue to monitor my symptoms? I just know it can lead to other serious complications later in life, and I do not know if it is beneficial to have a formal diagnosis.
Thank you for any help and guidance!
We had that with my daughter. All signs pointed to a Gluten intolerance, but at that point she was off gluten. It takes about a year to clear the inflammation. Since she is just intolerant, we didn't have to replace everything in the kitchen, but we have a cousin with celiac and they had to clear out the kitchen and start from scratch. It is hard at first, but eating gluten free is second nature to us now. There are so many replacements and online recipes. I always say that if it had to happen, thank god it happened in this day and age.
YES! valid points! I have found great alternatives, and my boyfriend has got me a kitchen aid and bread maker and we are going to try and make as much as we can at home as well! Just frustrating that health care lets us down sometimes
Praying for you.