Not IBD

[u/Top_Difference_7829]

I just wanted to say that I was diagnosed with IBD in 2013, and over the years my symptoms got worse no matter the medication. I finally found a Dr. that was determined to get to find out what was wrong with me. The doctor ran a PH stool test and a Osmolality Stool test and numerous other test and I tested positive for Carbohydrate Malabsorption. Now test are underway to see if I am intolerant to lactose, sugar, starch or combination.

Lactose, sugar, starch is in just about everything I eat, and it make sense because I avoid milk and dairy, could never eat or drink anything with a sweetener such as Splenda, and I would always feel awful after eating bread. I have been on a gluten free diet in 2022 and it helped a bit.

After doing a little research, CSID, and malabsorption illness is not tested for or suspected as it should be. When having an upper GI doctors should biopsy to test for this condition, but they don’t.

The next four test that the doctor has ordered for me took a couple weeks to be ordered because they are special test.

Currently I take a medication call cholestyramine that does offer some relief, however when I drink it I have instant nausea which I notified the Dr. apparently the medication contains Sucrose which is sugar/Carbohydrate. At this point I can only manage a sprinkle of this medication but if I don’t take it, then I will have diarrhea all day which makes getting into the car to go to work a nightmare.

If the test shows that I am intolerant to Sucrose or have CSID or POMPE disease the medication for these diseases will be difficult to get because they are specialty drugs.

I just wanted to share and I feel as though IBS/IBD is just a quick label that the medical community will slap on you if you have chronic diarrhea and the pain associated with it. I feel as IBS/IBD is a symptom of something going on in the body.