Mirtazapine was one of the anti-depressants that I tried but was unable to continue. The worst side effect for me was drowsiness that lasted well into the afternoon even after taking it for quite some time. I was only on 1/2 pill of the lowest dose but I could not get through the day without long naps. I am hoping you have better success with it.
Liked by kellye5
I don’t know where in Sweden you live, but usually you find specialists at the major hospitals- especially university hospitals. Could you ask her regular doctor if they can find out for you and give her a referral. Don’t give up. In my experience one has to be a little pushy to get things done there. Good luck!
@kellye5 I also have leg pain/aches and have not heard anyone else complain about these. Is there anything that helps you with this or have any doctors made any recommendations for the leg aches? The drs I have seen who know about cg do not believe that the leg pain is associated with it. Thank you.
Same for my son but you are maybe the 5th person to report these symptoms…While not a dr. I believe they are connected. He will take ES Tylenol. CBD. Not much helps with this disease I am afraid. Best of luck. We return to Mayo in October. so far deteriorating health since our visit. It is a beast.
I don’t suffer leg pain. My pain is only in stomach and gut. However, have you tried Magnesium supplement?
Perhaps painful legs may be related to not getting adequate nutrition due to issue with stomach.
Magnesium helps leg cramps so might be worth a try, that is if you haven’t already. Would not work instantly but maybe after taking for few weeks.
Liked by wendy2001
My 19 year old daughter was diagnosed with CG when she was 11. It has been a long road. She had a hemoglobin of 5 and had to receive transfusions. Took a very long time to diagnose. She is trying gluten free diet and we will see how it works. Has anyone had pain relief with this type of diet?
Hello @nm18, and welcome. I'm sorry to hear about your daughter, and so glad you've joined this group. I would sincerely encourage you to take a look at these videos on the Gastroenterology and GI Surgery Page on Connect:
– The Strange World of Non-Celiac Gluten Sensitivity https://connect.mayoclinic.org/newsfeed-post/the-strange-world-of-non-celiac-gluten-sensitivity-1/
– The Gluten-Free Diet: A Practical Look https://connect.mayoclinic.org/newsfeed-post/the-gluten-free-diet-a-practical-look-1/
I'm tagging @jng123 @guaranlam @bakingchick @mommyof6 @epvb @theresap @looloo @tlcollazo1230, who have all shared what works/what doesn’t with regard to various diets.
@nm18, has your daughter just started a gluten-free diet? May I ask if you could share more about how she managed her symptoms so far?
Wow! I like this group already. Thank you for the quick reply I feel like for I had no one to discuss this with for all these years that understood what she is going through. She just started the new diet a few days ago. She experiences stomach pain and lethargy on a daily basis. She does not watch her diet at all and I am convinced this could exacerbate symptoms. She loves very spicy foods and puts red pepper or hot sauce on everything. I am trying to have her limit that while she goes gluten free because I am convinced that hot foods spicy cause more pain as well.
Liked by Kanaaz Pereira, Connect Moderator
I eliminated spicy foods, acidic foods and fried foods several years ago and continue to do so more for heartburn than stomach ache issues. I tried a gluten free diet for 6 weeks but found there was no change in my symptoms. I find that I can eat a particular food several times with no problem, but that same food can cause severe stomach aches and pressure along my digestive tract the next time I eat it. There is no consistency with food and symptoms.
I have a 17 yr old son with CG. We are totally grain free, took out all additives and preservatives, and eat only organic grass fed meat. It's the GAPS protocol which is is similar to SCD that has been recommended for Crohn's patients. It's very hard to do but we finally have it down after 3 months. He is finally doing better which we are sooo excited about. PM if you would like to discuss.
Hello @nm18 – your daughter sounds a lot like me! I am 21 now and was diagnosed with CG when I was 19! I had to have 4 transfusions it blood and 2 of iron! It was crazy! I had no idea but I was jaudenice so the ER admitted me right away. Then I had an endoscopy and they found a lot of collagen. I am due for another endoscopy this June to see if anything’s changed. This might sound crazy but last summer I went vegan AND gluten free and I had never felt better. BUT after 3 months I was super light headed again and fatigued so i added meat back into my diet. Right now I am being gluten free and dairy free. I am actually haven’t quite a few stomach issues right now and feeling light headed very often- and this is eating healthy foods. Whenever I eat gluten my stomach feels ‘bubbly’ and I am tired. And dairy really upset my stomach with bloating aching and pain. Sometimes I feel CG is very similar to celiac disease. Which is a good disease to look at and somewhat follow protocol since there isn’t much to look at for CG. If your daughter wants to contact me since we are close in age / have similar experiences she / you can DM me!
@kellye5
Dr. Murray said that Budesonide was not the best option for us, @mindi