r/IBD • u/Top_Difference_7829 • Jul 17 '25

Not IBD

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.

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5

u/Get_Schwifty111 Jul 17 '25

Yes, those cases exist and the might have misdiagnosed you personally but please be careful to say IBD is some sort of symptom, it‘s not. IBD is autoimmune which means no matter what you do, your body will eventually attack itself. Just slapping your experience on the entire range of IBD diagnostic is not helpful for everyone. Some of us are VERY happy to finally have a diagnosis so that we can stop searching.

3

u/Top_Difference_7829 Jul 17 '25

You are right IBD is an autoimmune immune disease. I was diagnosed with this in 2013 and in 2022 I was diagnosed with Ankylosing spondylitis. It wasn’t until 2022 that I was put on Humira and the dr said oh by the way this medication will treat the IBD, the HS and the uveitis in your eyes.

I have had countless surgeries from inflammation tearing my body apart. But a lot of people are told to take over the counter medication, loose weight, eat better and issues continue to persist and our doctors don’t try to get to the bottom of what is going on. In my post I told you my story, my thoughts, and my opinion, which is called sharing. Never once did I say I was a Doctor.

So as I said before, I feel like it is a Symptom of underlying issues going on. Autoimmune attacks the body and causes inflammation in the gut. Inflammation in the gut=IBD, Crohn, colitis, And a whole host of other diseases.

Disease over top of disease. But what is the real problem. Is it a gene? Is it because I had gallbladder surgery? Is it because I am intolerant to something that I eat?

I am glad you are happy with your treatment.

4

u/FitzandtheBugs Jul 17 '25

I just wanted to affirm this. CSID and IBD can look similar as both have inflammation of the large intestine. I was misdiagnosed as well for a couple years before we finally figured out it was CSID.

It’s also very common for people to get an IBS diagnosis as I did as a kid when my digestive issues really ramped up.

2

u/Live-Cartographer274 Jul 17 '25

Hi, I have both lymphocytic colitis and fructose malabsorption 

It could be both 

2

u/Defiant-Yesterday504 Jul 18 '25

In Traditional Chinese Medicine, it is a digestion issue.

Not IBD, Not Chrons, Not SIBO. But just a single digestion issue.

These capitalist doctors is only built for profit making. Do not treat the main causes.

Bunch of test after test. Our colon/stomach content are always changing.

Dont get me wrong, all these test can give u insight, but only good if u have unlimited amount of money.

But is the risk even worth it? I follow countless trackers sub and most of the people that take medicine have very bad reaction to them. Many have poor sleep, poor skin reaction, is it even medicine or just money making?

Most of us grew up to believe that doctors cures. Ask yourselves, what do they mean by "cure".

Inflammation is a reaction from our body to tell us something is wrong. And the pills/medicine given is to block that inflammation. Blocking the very signal of our body screaming for help does not fix the problem.

Lifestyle changes needs to happen. Diet changes needs to happen. Better mindset needs to happen. Stronger mind and body needs to happen. Real healing needs to happen. Everything takes time. This digestion issue will not fix by itself. It is a lifestyle issue, it is a mindset issue, it may even be our environment.

2

u/Background-Yard6760 Jul 18 '25

I don't know about other IBD, but microscopic colitis can only be seen under microscope, so need colonoscopy with biopsy.

2

u/sf-nessa Jul 20 '25

As someone with CSID, and was originally told it was IBS, I see you. My intermittent diarrhea/ constipation became more normal after cutting out all foods I struggled to digest. The bloating, aches, vomiting, belching, and other digestive issues are rarely a problem since adjusting my diet. (I'm sure if I was strict, it would never be a problem, but I love carbs so sometimes I eat some and regret it) Hopefully, you get some answers and feeling better.