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Big Surprise For Me.

Simona19

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Simona19 Collaborator
Simona19
Posted

Hi!

Tomorrow early morning I will have my second endoscope after 1 year on gluten free diet. I saw my first Gastroenterologist last week on Wednesday. He ordered some blood work and upper endoscope because I still have some major unresolved issues. I can

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Simona19 Collaborator
Simona19
Posted
  • Author

I just got home from my upper endoscope and everything was perfect. No ulcers, tumors, cancer, nothing. Just my throat hurts a lot. Doctor told me that I might have SIBO again and also some neurological issue. I need to fallow with neurologist also. She took many samples from intestines. I just need to wait for the results. She also thinks that might have diverticulitis, or something with small intestine because of my low magnesium and B12 levels. Now I just need to wait and see.

T.H. Community Regular
T.H.
Posted

Good luck to you, hon!

A quick question...he wasn't performing the endo FOR celiac disease, right? He's just checking to see what else was going on and thinks celiac disease might have been part of the issue, yes?

I only ask because you've been on the gluten-free diet for a year now, so there'd be nothing to find on the endo for that unless you've been on gluten again for a few months, ya know?

Re: other issues. You said that you had a lot of tests done this last year. Did they do one for food allergies, as well? Fructose malabsorption? Did they have you do an elimination diet and keep a food journal to see if eliminating any foods might help, or if they could find any connections? If you did do an elimination diet, did they ever have you eliminate annatto or gums like xanthan gum and guar gum?

Not that any of these are necessarily the issue, but I know for me, food allergies are a definite complicating factor. I do not get hives or traditional 'allergy' symptoms. However, I tested barely, barely positive to a few foods, and there are a few others that, after keeping a food journal, we also realized were a big no-no if I want my insides to be happy and healthy.

If I eat some of these, my insides are hurt, inflamed, miserable. I get the big D real fast. With one, I get a horrendous pain in my side, every single time, always in the same place. No scan has found a problem there and the doctors don't know why it happens, but it's always the same place, same food.

If they haven't checked you for fructose malabsorption, you might want to investigate that one. It's relatively new to the medical scene, especially to doctors in the USA. The foods that cause the trouble are various grains, fruit, veggies, legumes - a long list of offenders that the web is good for tracking down.

Annatto is a natural dye in tons of foods and often can simply be listed as 'natural dye' or other vague terms, but many people have bad intestinal reactions to it. As it's an intolerance and not an allergy, there is no test for this other than an elimination diet. (Great blog here that lists lots of information about this:

Open Original Shared Link )

If you've been eating gluten free, and eating processed gluten free food, you've probably been upping your intake in gums since they add these to so many of them. Some people have a nasty reaction to these, especially xanthan gum - an intolerance, I believe, not an allergy, so again, no test for it aside from elimination diet. Lots of intestinal badness here, too.

Don't know that any of the above apply, but I figure better to mention them and possibly waste your time and keep quiet when you could have used the information, you know?

So sorry that you're still having to search for answers, but hoping that you can find them soon! Hopefully lots of people here can help with the hunt for a solution. :-)

Simona19 Collaborator
Simona19
Posted
  • Author

Good luck to you, hon!

A quick question...he wasn't performing the endo FOR celiac disease, right? He's just checking to see what else was going on and thinks celiac disease might have been part of the issue, yes?

I only ask because you've been on the gluten-free diet for a year now, so there'd be nothing to find on the endo for that unless you've been on gluten again for a few months, ya know?

+++I know and he know that too. The reason why I was surprised in his office:

I saw this doctor two weeks after ER visit last year in May. Before I went to ER, I had constant pain on left side of the body for 4 days and also stomach twitch for 20 hours without break, not able to eat, or drink. Just two sips of water made me nauseous, more stomach pain, very weak, palpitation with any small movement, feeling like I have strong flu.

This doctor performed the upper endoscope last year. It was inconclusive, but MARSH1- beginning of celiac disease with ???. I also had mild gastritis and mild acid reflux. When doctor told me about possibility of having celiac disease, I went gluten free right away. I checked something on the internet about celiac and that was it. I didn

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