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Frustrated And Don't Know What To Do

nikkigal

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nikkigal Rookie
nikkigal
Posted

Hi all,

I feel like this might be repetitive, so sorry in advance.

I just turned 20 and have had stomach problems for at least 7 years. In the beginning, I had diarrhea and vomiting and constant stomach pain. I ended up getting exploratory surgery and had my appendix removed. Symptoms subsided for a bit, but I still had cramping after most meals and a very sensitive stomach. Within the last 2 years things have gotten much worse. I've had a variety of symptoms and when I came across celiac, I really thought it would explain everything.

A list of symptoms:

1. bloating, gas, abdominal cramping

2. iron deficiency anemia

3. D or loose stools with lots of undigested food and muscus

4. dermagraphism, hives, itchy skin

5. more fatigue than most people my age, at college I actually get a descent amount of sleep but am always exhausted

6. pica- i love flour and uncooked pasta

7. headaches - throbbing pain on one side of my head, about one every 2 weeks

8. There are a lot of stomach related issues in my family, but no one ever feels the need to get tested

I finally convinced my parents to take me to a GI doctor. I got the blood test for celiac, said it was negative. I got a colonoscopy a week ago, negative. Every since the colonoscopy my stomach has been in enormous pain. I got an x-ray today and they discovered there was a pocket of air that was never removed after the procedure. I have a feeling that my doctor tries to see as many patients as possible and I am not treated as an individual. It is much harder when my parents are starting to believe the doctor and the stress is causing my symptoms.

He says it is just IBS and I have a sensitive stomach and a proper diet will help my symptoms. I eat pretty healthy and exercise frequently. I've asked several times to be tested for celiac again or to request more specific testing (since I'm from NY it is illegal to order from entrolab). I don't get why they won't do more testing if I have insurance and I will pay for it. Does this sound like it could be celiac?

I've read a lot about people trying the gluten free diet and it helping. I'm a bit hesitant to start the gluten free diet if there is more testing I can get before I try the diet. I am going to call my primary doctor and see what she recommends.

Any advice is greatly appreciated! :D

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kareng Grand Master
kareng
Posted

A colonoscopy isn't for diagnosing Celiac. You need an endoscopy with ,multiple biopsies. celiac is in the upper ( small) intestine. A colonoscopy looks at the lower ( large intestine). Sorry. Yours isn't the only GI who doesn't know what he is doing.

eatmeat4good Enthusiast
eatmeat4good
Posted

Oh wow! Another walking poster child for Celiac/Gluten Intolerance.

And Oh my God...Another ignorant GI who doesn't know endoscopy from colonoscopy.

Try to get the endoscopy. If you can't or if it comes up negative, try the gluten free diet stricly for several months. Gluten Intolerance is every bit as miserable to live with as Celiac...tests or no tests.

Simona19 Collaborator
Simona19
Posted

If you have insurance and you are from New York, then make appointment at Celiac center in Columbia University Hospital in New York. They found many things that I have, or had and they will also test everything what need to be tested. I saw doctor Tennyson, but any doctor would take you.

nikkigal Rookie
nikkigal
Posted
  • Author

If you have insurance and you are from New York, then make appointment at Celiac center in Columbia University Hospital in New York. They found many things that I have, or had and they will also test everything what need to be tested. I saw doctor Tennyson, but any doctor would take you.

even if you don't have a formal diagnosis? i'm going to try the gluten free diet for about 2 weeks and see how i feel. my GI is being somewhat supportive in my experiment.

kareng Grand Master
kareng
Posted

even if you don't have a formal diagnosis? i'm going to try the gluten free diet for about 2 weeks and see how i feel. my GI is being somewhat supportive in my experiment.

Sure. They will see you to diagnosis the Celiac or something else. They won't want you to be off gluten tho.

nikkigal Rookie
nikkigal
Posted
  • Author

Oh wow! Another walking poster child for Celiac/Gluten Intolerance.

And Oh my God...Another ignorant GI who doesn't know endoscopy from colonoscopy.

Try to get the endoscopy. If you can't or if it comes up negative, try the gluten free diet stricly for several months. Gluten Intolerance is every bit as miserable to live with as Celiac...tests or no tests.

is it really worth getting all these tests?

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mommida Enthusiast
mommida
Posted

It was mentioned but KEEP EATING GLUTEN during testing!

The problem is the symptoms for Celiac and gluten sensitivity are associated with other disorders. Gluten can also be a "trigger" for other disorders or just known to excerbate other illnesses. It would be best to get a proper diagnoses. If you end up being diagnosed with another illness, you can use a gluten free diet to help manage other disorders/diseases. If the diagnoses is Celiac/DH/gluten sensitivity a gluten free diet is your primary treatment, but you may need to supplement vitamins and minerals.

It might be helpful to keep a food journal (even while eating gluten) to pinpoint other food sensitvities.

nikkigal Rookie
nikkigal
Posted
  • Author

It was mentioned but KEEP EATING GLUTEN during testing!

The problem is the symptoms for Celiac and gluten sensitivity are associated with other disorders. Gluten can also be a "trigger" for other disorders or just known to excerbate other illnesses. It would be best to get a proper diagnoses. If you end up being diagnosed with another illness, you can use a gluten free diet to help manage other disorders/diseases. If the diagnoses is Celiac/DH/gluten sensitivity a gluten free diet is your primary treatment, but you may need to supplement vitamins and minerals.

It might be helpful to keep a food journal (even while eating gluten) to pinpoint other food sensitvities.

keeping a journal is a really good idea. I have an appointment at the Celiac center at Columbia, I discussed the options with my parents and they want to make sure it is Celiacs.

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