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Not Sure Where To Go From Here

scarlettmoon

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scarlettmoon Newbie
scarlettmoon
Posted

Hello all,

For the last year now, I have been struggling with my insides. What started out as a bout with constipation, has led to 6 fiber pills 3 times a day, Mirelax 2 times a day and a constant focus on my bowel movements. And yes, Im only 30. 3 months ago, I had my first nightmare colonoscopy. My 9 year old niece was diagnosed with Crohn's disease, so it was suggested that I had the same. There was bright red blood in my stool if I had any bowel movements at all. Colon cancer runs in my paternal side of the family. After my colonoscopy, benign polyps were found but otherwise nothing substantial. And certainly, nothing pointing to a diagnosis of the chronic constipation. 3 months after the colonoscopy, and after a steroid therapy, there is still blood in my stool. Nothing is working. My GI doctor doesnt know why. I live in constant fear of running out of fiber pills, fish oil and probotics. My general practitioner blew me off saying I had IBS and to learn to deal with it. My GI doctor told me i just have a sluggish colon. I have been to the ER with intestines that were nearly splitting at the seams, so to speak. My GI doctor doesnt seem the need for an Endoscopy due to the fact that my colonoscopy was clean. Help. I just dont know what to do. Since I am only 30, its really embaressing and difficult to talk to peers about this problem. I am unable to donate blood to to a lack of iron in my blood. I drink a ton of water, yet everytime I have a blood test they say I am dehydrated. I have never heard of someone that was Gluten allergic that had constipation instead of diarrhea.

Besides constipation, I have a geographical tongue in the last 3 years suddenly. I have become increasingly stupid, forgetting words even. Memory loss is happening. I NEVER sleep an entire night without waking up ever 3-4 hours. I have excessive bloating and gas, and my weight is yo-yoing between 10-20 lbs constantly.

Please help. My doctor's keep brushing me off, and I am feeling like a hypochondriac. Am I right to believe something is wrong with my body? After my colonoscopy, I had a high fever due to some sort of infection, and was put on a liquid diet for 2 weeks. It was the best I have felt in quite sometime (even with a 102 degree fever!).

Any suggestions? New doctors? More fiber? I had to BEG and CRY for my general practioner to give me the referral for the colonoscopy alone and even then she referred me for a sigmoidocopy. Help Help.

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Skylark Collaborator
Skylark
Posted

You are NOT hypochondriac. Never give up. You know your own body far better than a doctor ever can - you live in it.

We have a LOT of people on the board who have constipation instead of diarrhea from gluten intolerance. Your low iron is a sign of it, and your memory problems a sign of the hypothyroidism that commonly comes with gluten intolerance.

You have two choices.

1) Find a doctor who will test you for celiac. You MUST be eating a full gluten diet for tests to work.

2) Forgo testing and just try the diet. There is no harm in skipping the celiac testing, since you've had other problems ruled out. Even if you get tested and come up negative you'll want to try the diet, as celiac tests don't pick up gluten intolerance.

If you forgo testing you may end up wondering whether you're celiac or just gluten intolerant. The issue for some people about being undiagnosed is not knowing how badly eating gluten will hurt you. I chose to skip testing, so I must eat as if I'm celiac. Turns out gluten makes me sick enough that I am not inclined to eat it either way.

samie Contributor
samie
Posted

If your doctor won't do the endoscope i would find a different doctor. Also low iron can be a symptom of celiac. I had that as one of my problems for over ten years never knew till i was in the hospital and they decided to do the scope because of that and blood in the stool.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

It sounds like time to find a new Dr? :( if you want to get tested, continue to eat gluten o the test will be accurate. Sometimes the blood test comes back as normal though, and gluten could still be your problem.

Your symptoms sure sound like it could fit?

You don't need to have an endoscope to know if you have a problem with gluten. Having a diagnosis of Celiac helps you stick to the restricted diet better, maybe? Or might make others realize there really is a problem? BUT if you want to find out if that's what your problem is, you don't need permission to try going gluten free on your own. Just make sure you're not eating any..not even trace amounts. Replace your toothbrush..and check your toothpaste and shampoo. Then eat whole foods like fruits and veggies, unprocessed meats, and rice.

Stay on the diet and see how you feel? You may have to switch to phsylium(sp?) for fiber or you may find that things get more normal for you and you won't need it? Just wanted to give you a head's up to check your source for fiber.

I hope you find your answers and start feeling better!

scarlettmoon Newbie
scarlettmoon
Posted
  • Author

Thank you so much everyone! I really appreciate all of your responses. Support from other people really does help so much. Having embaressing "problems" are harder to talk about freely.

Thank you for all of your advice and help.

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