If Not Celiacs Then What?

[Specval09]

Hello Everyone My name is Valerie I'm 24 and I believe have celiacs.

Before I get into my story I think i should provide a little information about my symptoms. For 6 months now I've been having severe painful heartburn every time I eat and/or lay down. The heartburn is so bad that sometimes I find it hard to breath when i'm having a 'spell.' I've also been suffering from excessive gas, belching, sour burping, stomach cramping, multi colored stool (brown/tan/pale yellow)which often comes out in diarrhea form, and my stomach is constantly making strange gurgling noises.

Other possible symptoms non-digestive related include joint pain (rheumatologist diagnosed me as double jointed/hyper mobile and that's why all of my joints hurt), back pain, hair loss, tooth issues (my teeth are very weak, at the age of 24 i've already had 1 root canal and a cavity in between almost every tooth) increased acne, fatigue, and increased irritability. The last few symptoms could be due to me being a law student. I should also mention that I have missed my period for the past 3 months and have been tested multiple times to verify that I am not pregnant.

I've been tested for anemia and my results came back w/in normal limits. I've also been tested multiple times for thyroid issues (Dr.'s always think that's my issue) and the tests have also come back w/in normal limits.

I'm fortunate enough that my GI specialist knows about Celiancs and sent me for a Upper GI endoscopy after my first consultation. Yesterday he did biopsy's in multiple places and generally just looked to see what was going on in there. At the end of it I joked around saying that I planned on going grocery shopping that night, would he reccomend I buy some pasta. His exact response was "if i was a betting man I would bet that you didn't have Celiacs but I have been proven wrong before"

I'm still waiting for the biopsy results which I should have next week but this is what findings were presented to me

"Normal mucosa in the whole duodenum (biopsy)"

"Erythema in the antrum compatible with gastritis (Biopsy, biopsy)"

"Small hiatal hernia"

"Grade B esophagitis (biopsy)"

Are the Biopsy results 100% accurate? How could the Dr. be so sure that I didn't have Celiacs just by looking at my intestines (assuming that villi are too small to be seen with the naked eye)?

When he said he didn't think it was celiacs I asked him what else it could be and he said the hiatal hernia (which is when the stomach protrudes a little bit over the diaphram muscle and causes heartburn) could be why I have severe heartburn and that could be causing my other symptoms. This makes sense b/c my PCP had originally put me on prilosec and my symptoms resolved while I was on it. The day after I stopped taking it (per my dr.) my symptoms returned. What I don't get is.... what about all of my other symptoms, How is heartburn causing the gas, burping and stomach cramping? and Why do I all of a sudden have 'extra acid' to the point where its bothering me. The Dr. said it could also be IBS.

I'm not willing to accept IBS as a diagnosis for my own personal reasons. I believe it exists but i just keep thinking that if my bowel is irritated something must be irritating it but since the dr.'s don't know they diagnose IBS.

I guess my questions are, based on my above symptoms and findings.... what could be causing my issues? I'm looking for any other possibilities or even things that I should ask my GI specialist to look into.

Any and all suggestions and information are welcome. Thank you in advance for your time.

[nora-n]

In the old days, they thought only total villous atrophy was celiac.

Now the gluten intolerant spectrum is widening.

Some people only have inflamed stomach and increased intraepithelial lymphocytes.

Dr. Lewey writes about that, and he also says that they need to do a special stain for the increased intraepithelial lymphocytes, and the old standard was so-and so but now they think that 5 or more per illi is celiac. And that many doctors have not got it yet. You cannot see that with your eyes.

Here is a google translate finnish paper on celiac, that might be interesing: Open Original Shared Link and run it through google translate

[ravenwoodglass]

I would go ahead and start a trial of the diet. You have had the testing and biopsies and a trial is advised no matter what the outcome of those. Biopsies do have false negatives. Your body may give the answer before that followup appt.

[Specval09]

Thank you very much for the responses. After going through different threads I realized that there is an abundance of "Do i have celiacs" treads and I'm sure that must get annoying.

Nora- I read that article thank you it was interesting and informative. If I go and ask my Dr. How many Itraepithelial lymphcytes per illi I have should he be able to tell me that? My Dr. seems to be very proactive. He actually mentioned Celiacs to me and skipped right over the blood tests to the biopsy so I would really expect that he knows the about the new and up and coming standards. But I will make sure to ask him about them.

Raven - I plan on going through my kitchen this weekend and seeing what has gluten and what doesn't and marking them. Then I get the results on Monday so either way I'll be ready to start the diet on monday. I've cut back on my gluten intake but I am unable to go gluten free mid week, mostly just because I don't know what is involved.

thank you again for the imput

[nora-n]

It is not annoying with all the do I have celiac-threads.....we see averyone is different and has more or less different symptoms and questions.

About the IEL's, you can try to print out dr. Leweys' thoughts on them, it is somewhere on his blog or webiste on www.thefooddoc.com

i think fooddoc journal

It is not so easy to navigate to all the pages, but it should be there.

Inflammation is the first sign of celiac as far as I remember.

It is often useful to get the blood test done, as a positive test does mean something, all tests do not need to be positive, just one of them might be sufficient together with response to the gluten free diet.

The fins recently screened a lot of old people jsut to see how many really have celac, and they ended up 3% of old people positive for the tissue transglutaminase test.

The strange thing is that they denied having symptoms.

The fins say that there are several presentations of celiac, also the type with les symptoms and less findings by endoscopy.

And, Dr. Lewey writs about the more subtle findings in biopsies.

I think some need special staining.

nora