Desperately Seeking Advice On Diagnosis

[SmallWorldBigBelly]

Hi All!

I've been reading some of the posts on this forum and I'm desperately trying to find some answers of my own. This forum gives me a little bit of hope.

I have been suffering for about a year and a half now. Almost every time I eat I have horrible stomach pains, severe bloating(people have asked if I'm pregnant), bad taste in my mouth, only have gotten my period 4 times this year and I fluctuate between having diarrhea and constipation. As a very young child I was always in and out of the hospital with stomach and digestive issues...but no real diagnosis. It wasn't an issue as I grew up until this year.

I've seen my primary,GI, gynecologist, allergist. I had positive test results on my IgG and IgA tests but negative on my endoscopy and colonoscopy. My GI says I have undigested fat in my stool....but that I have IBS.

Any ideas of where to go from here would be extremely helpful!? Thanks so much.

[Lisa]

. I had positive test results on my IgG and IgA tests oscopy.

You have found your answer, now find a new doctor.

A positive serologic panel is considered a diagnosis. Sometimes and endo/biopsy can support that conclusion, but not always because effected areas can be missed.

Welcome to the Club!

[ravenwoodglass]

There are false negatives with biopsy, and it sounds like that is what you had. Now you get on the diet, strictly. I think you will be surprised how well you feel once you have been gluten-free for a bit. Welcome to the board and get yourself on the diet today.

[byoung20415]

Yes, the tests can truly be misleading because if they don't test the affected area they can't see it. So, it can be years before you get correctly diagnosed. Sometimes that diagnosis it's by accident - a trial type thing. Try staying away from gluten to see if you feel better... the problem with that is gluten is everywhere! So, remember to remove gluten not only from your food, but from everything else too. Your shampoo, soap, lotions, creams, make-up, hair products, RAZORS (the little strip of gel contains gluten), laundry soap, cleaning products... and gluten is also found in stain sealers, so if you have a sofa or chair that is cloth with a stain sealer on it, or carpet, it most likely contains gluten.

[dmurth01]

I also had positive bloodwork (ttg-iga) with a negative biopsy. One thing I've learned over the past few months is that most doctors don't know much about gluten sensitivity.

I've had many of the same symptoms as you. I felt better IMMEDIATELY once I went gluten-free 2 weeks ago. The thing is, now when I do run into gluten I'm finding more adverse reactions. However, I don't have the intense moodswings I used to and while I'm still tired a lot, I have more prolonged periods of energy.

It's still early, and I know I'm still adjusting...I was the biggest gluten-eater you could find! I used to have a big bowl of Kashi cereal for breakfast, a FiberOne bar for mid-morning snack, a wrap for lunch, more cereal to snack on etc. etc... No wonder I have felt like crap for so long!

Give the diet a try. It has many ups and downs, but I know it's better to have some hope of feeling better in the long run than to continue poisoning myself!

Also, read Dangerous Grains by James Braly. I'm in the middle of it now, and you'd be surprised how much you will probably relate all of your symptoms to gluten!

[dmurth01]

Open Original Shared Link

Positive serologic tests in the presence of a normal biopsy

This situation occasionally arises. The presence of a positive EMA with a normal biopsy indicates either the presence of celiac disease that was not detected in the biopsy, either because of too few pieces being taken or misinterpretation. The biopsy should be reviewed by an expert gastrointestinal pathologist. If it is considered to be truly a normal biopsy the patient may well have latent celiac disease and will probably develop the disease at a later date.