After years of suffering, I may have undiagnosed celiac disease.(Please respond. I have a problem)

[Rose G]

Hello, so I’m 15, which will be important information to understand the rest of this, and I have suffered with many strange symptoms for 4 years now. I didn’t complain for months at first because I thought it was silly. You see, when I was 11, I got this really big lump in my throat and tightness in my chest. It would get worse when I ate or laid down. Of course, that is why three different doctors diagnosed me with acid reflux. Made sense right? Well, after being on acid reflux meds for 2 years with no effect, I decided it would be best to call it quits. I managed to convince my parents to take me back to the doctor where I was tested for hypo and hyperthyroidism. Both negative. It got worse and worse and my parents literally stopped caring. I think they thought I was making my suffering up. I convinced them to take me once more but to a specialist and you know what he did? He went into a speech about hysteria and women getting overly emotional and diagnosed me with anxiety. I cried on the spot and then mom yelled at me in the car for crying. At this point, it had been about 3 and a half years and I was fed up. My doctors and parents all thought I was either being over dramatic or faking it. I decided I would have to live in misery. By misery I mean it got to the point where I’d cry myself to sleep because it felt like my throat was closing in and my chest was being crushed. I was always tired, dizzy, anaemic, my legs would be sore especially in the morning, I would get migraines and a sharp pain in my abdomen after meals. None of it made sense. What did this have to do with acid reflux or anxiety? I went out of my mind. I was so depressed, and I actually did get anxiety, I even have these symptoms before meals. That’s right, I was always super uncomfortable. I did get slight chest relief when I pressed hard on the area between my ribs. I’m not sure why? Besides that, 4 years and I haven’t been totally rid of these symptoms for even a second. I never did think I’d ever feel normal again. I’ve actually forgotten what it feels like. Then, I stumble upon a forum with several people in the same situation as me. They had the same symptoms and went undiagnosed for years until they were finally diagnosed with celiac. Now, I have regained hope. However, my parents will not bring me to a doctor again, so what should I do? Should I simply give up gluten and see if I get better? Should I worry about damage to my intestines or infertility? It’s been 4 years of damage and children are very important to me. Please advise me on this. Apologies for the long explanation.

[Ennis-TX]

The throat and chest tightness I have seen somewhere else on the forum from another member, I can not recall what it was but there was a medical term for it.
The testing for celiac requires you to be eating gluten daily at least 1-2 slices of bread worth for 6-8 weeks (12 used to be the normal) for the blood test, they then confirm with a endoscopy and biopsies. If you can not get your parents to take you to a doctor, perhaps you can get them to order a online test like LetsGetChecked celiac test, if it comes back positive then perhaps you can get to the doctors for proper testing and follow up care.

If not you can always trial the diet...but to really see results it means strictly gluten free and it can take over a year to heal, it can also take 6 weeks for the body to stop attacking after a exposure. Do note this means no eating out (unless a dedicated restaurant), and fixing food will be a issue as you have to take measures against cross contamination. Unless you can cook all your own food that is and have your own set of cookware. The body will respond to even tiny amounts of gluten from scratched cutting boards/pots/pans, wooden cooking utensils, crumbs in peanut butter, jelly, or butter containers. While there are premade gluten free meals and food options you can just microwave in the store, these are generally carb loaded with simple starches and practically junk food, so the best method is a whole food home cooked diet. Of course you could always start off cheap with nordicware microwave cookware and just cooking some eggs in the egg cookers and other meats on the grill plates with splatter covers, just insure the prep area is clean.

As for damage done, your still young and if your get diagnosed you will probably completely heal without any repercussions in a year or 2 if your strict about the diet. Infertility...Up front, wait til your in your 20s at least and have a supporting environment, jobs, living conditions and a spouse. But older members that have been exposed and taking damage longer and been able to finally been able to carry to term on the diet so you do not need to worry.