Elusive Diagnosis

[Bella2377]

Hello All,

I am almost at the end of my rope. I have been having stomach issues for the last 4.5 years. I will start at the beginning about 4.5 years ago after a long round of antibiotics I ended up with a really bad case of C-diff which went a few weeks with out diagnosis and left my intestines ravaged. Even after all the treatment was over I had daily bouts of diarrhea prob on average 7 trips a day to the rest room. Shortly after this I began suffering from severe Migraine with Auras (mine are like a mini stroke). Shortly after that out of the blue panic attacks. This was all with in 6 months of my C-Diff. Since then I have been plagued by the following symptoms

-diarrhea - still averaging 7 trips or more

-oily and foul smelling stool (i am sorry so gross)

-gas

-stomach bloating

-stomach pains

-extreme fatigue

-b-12 deficient (now relieving monthly shots)

-Vit D deficient

-changes in vision (never needed glasses before)

-hair loss

-bumps all over my skin

-swollen eyes

-swollen fingers(RA negative)

-unexplained weight gain. was on weight watchers and just kept gaining

I have had multiple blood tests and they have all been negative. I have also been tested for infections of any kind and they have also been negative. Thyroid tests. I went through fecal fat collection for malabsorption and it was inconclusive.

I last went to my gastro and she told me it was in my head and prob related to stress which I might accept as an answer if the diarrhea got better and then got worse or if I wasn't vitamin deficient despite having a very healthy diet. I have been so frustrated by all of this that i have been searching online and came across your forum.

I am wondering can all of this be caused by gluten even with negative blood tests.

Any help is appreciated.

[kpryan]

That definitely sounds like it could be gluten related. I would firstly see a diff gastro...one that believes you and your symptoms.

Have you had celiac testing? How about a biopsy?

Your symptoms definitely sound like celiac/gluten intolerance.....

[Bella2377]

I have only had the blood tests several times and they have all been negative the first few i think because i avoid alot of carbs because they make me bloated but the last blood test was also negative and i had to increase my gluten for two weeks before and I was miserable. Headaches, bumps all over my skin, my face broke out horribly. A week and a half of gluten free and I still look a few months pregnant. If the blood tests are negative will the biopsy be as well?

[Emilushka]

I have only had the blood tests several times and they have all been negative the first few i think because i avoid alot of carbs because they make me bloated but the last blood test was also negative and i had to increase my gluten for two weeks before and I was miserable. Headaches, bumps all over my skin, my face broke out horribly. A week and a half of gluten free and I still look a few months pregnant. If the blood tests are negative will the biopsy be as well?

The biopsies may or may not be positive. The biopsies look for something different from the antibodies (they're looking for the damage to your intestines) so it's possible for the biopsies to be positive while your blood tests are negative. The way Celiac damages the gut is very splotchy, so there are always chances that they will miss the parts that are damaged even though you have serious damage. With your nutritional deficiencies it sounds to me like you for sure have damage somewhere, but the question is really whether or not the endoscopy biopsies would find those areas for you. They might not. Doesn't mean the damage isn't there.

It's also possible to be gluten intolerant without having "Celiac Disease" so you have that chance as well.

Are you already on the gluten-free diet? If so, doing the endoscopy and biopsies would require you to get back on gluten. At this point if you've been gluten-free for a week and you're prepped to keep going with it, you might get more bang for your buck if you just stay gluten free for a while now. Given how much you're suffering, I hate to stop you mid-effort and tell you to start eating more gluten again.

I totally agree about getting a new GI doc, though. Or give your current one two options: say that you are going to pursue this until you can find a REASON for your diarrhea and nutritional deficiencies, currently considering gluten intolerance/Celiac Disease, and if the GI doc wants to support you in this then that's great OR you are going to find another doctor.

You're not tied to your doc - you're a client, if you will. If they're not providing the service they should and you LIKE them, give them a last chance and make it clear that it's a last chance. If you don't like them, fire them. Hire someone new and better who will give you the service you do want.