Confused, frustrated and feeling sorry for myself!

[Jen-cleve]

Hi, I'm new to the forum and newly diagnosed. I'm so happy I've found this!

I was diagnosed with IBS about 10yrs ago and symptoms just continued to get worse. Back and forth to gp being told it's 'just' IBS and to self manage. This continued until 6wks ago when I reached a point of chronic diarrhoea, nausea/vomiting and abdominal pain I couldn't function. Anything I ate came straight out either up or down I resorted to driving sat on a black bag with a bag on passenger seat. Unbearable tiredness, aching and my skin is horrific. Back to gp who ran my thyroid bloods. Levels came back at 34.6 way out of normal range (.4-4) so they upped meds despite me trying to explain I was taking them just evidently they're not getting in system. Gp refused to consider anything else despite autoimmune diseases in immediate family and sent me off with 200mcg levothyroxine. Went back to gp and saw a different one who ran bloods but told me they were normal. By this point I was feeling as though I was losing the plot and a massive hypochondriac. symptoms persisted to the point I'm just scared to eat anything and dropped 5kg in 4wks. At this point they referred me to endoscopy under cancer pathway so I spent 3days thinking I was dying (hypothyroidism reigns) walked into consult room and he told me bloods were positive for coeliac disease (weak positive) and ordered biopsy. I have just had biopsy results and a confirmed diagnosis of coeliac disease. I've had more blood taken, referred for bone density (no idea) and now waiting on dietician appointment. All I've been told in meantime is to eliminate gluten from diet. 

I'm relieved to have diagnosis as from my frantic googling I think things will ease without gluten in diet but was wondering if anyone could offer some reassurance to this and that eating foods without gluten will be ok?! I'm so scared to eat anything. I feel horrific and am stuck in middle part with diagnosis but no clue where to start with anything until see dietician. 

Please can anyone relate or suggest something that might make me feel slightly better? 

If you got this far thank you so much for reading and sorry for long post x

[BuddhaBar]

Welcome

Yes, things will get better, but give it time. Give it lots of time. You've been sick for 10 years. 10 years do A LOT of damage so expect a long recovery. Don't give up. You will still be sick for a long period of times, but it will gradually get better and better. You will get glutened too, especially in the beginning. Google, google, google everything you can. Eat as few processed foods as you can. Check ingredients in toothpaste, mouth wash, pain killers, supplements etc. Replace old scratched pans, cutting boards etc, deep clean the kitchen. Keep in mind that one grain of wheat flour is ENORMOUS in size compared to a strep bacteria. Just one strep bacteria is enough for you immune system to react so imagine what a tiny tiny amount of gluten can do. 
YOU CAN DO IT!

[Corinne D.]

Hello there! Sounds like you've reached bottom. Now the only way is up!

Yes, things will improve if you stay strictly gluten free and you should not be afraid to eat. On the contrary, your body is most likely screaming for nutrient-dense foods so that it can heal!

For now, it would help if you stuck to whole foods that are easy to digest. Soups and stews are recommended, with meat and veggies. Try to reduce sugar, refined oils and processed foods as much as you can. Focus on healthy fats, include eggs, avocadoes, coconut milk and coconut oil, as well as virgin olive oil in your diet. In the beginning at least, you may have issues with oats and dairy products, so be suspicious of those in case symptoms don't let up or come back. It is best if you refrain from eating out until you are better and have got the hang of this diet.

It's tough to get the celiac diagnosis, but in a way it's also good news, because now you know what you have and what you need to do. In any case, avoid gluten in any form or amount and you will surely get better.

So chin up, bright times are coming!