Neg Biopsy :(

[shannon79]

So, finally got my biopsy results: all normal/neg. No evidence of celiac, h. pylori....They did find a hiatal hernia, gastritis and diverticulosis. Which, oddly, as I read other's posts here I keep finding people who get those same findings in biopsy???! Odd coincidence?

Anyway, I took gluten out the day after my biopsy (about 4 weeks now). And aside from one day of cc--which I paid dearly and immediately for--the massive stomach pain has been gone, the diarrhea has somewhat resolved, the joint pains have been greatly reduced, and my weight loss has stopped. I admit I have not been very strict about cc...I cook gluten products for my family regularly, I work in an Italian restaurant (which my husband keeps saying I'll have to quit, as there is quite literally flour everywhere).

But yes, the negative biopsies did very much take the wind out of my sails. I have a followup scheduled for the 24th of this month, and I'm not sure what is going to happen. Based on only ONE number being /slightly/ elevated in my panel, but everything else neg for celiac, I have a hard time believing I'll get an official diagnosis. I have gallstones also, and they do cause me pain, so he's referring me to a surgeon...and I think they may blame everything on that. 

He started me on Pepcid after the biopsy, even though I told him I have no symptoms of heartburn or reflux. The pharmacist said that's generally the first thing they try for gastritis. So I took 2 20 mg pills/day for about a week and a half, and had heartburn every day! To me that doesn't even make sense, but last week I forgot to refill my little weekly pill sorter thing so I wasn't taking them and suddenly realized I haven't had any heartburn since. 

So, I don't exactly know what I'm asking...or even if I'm asking anything. I just feel like now I'm fighting an uphill battle, one where I'm not secure enough in myself without a diagnosis. Everyone in my family and circle has asked the results of my biopsy, and I feel like an idiot saying "Neg, BUT..." "Yeah, BUT..." "No I can still have it! Maybe?" Helping people understand the difference between a "gluten-free diet" and celiac disease has me frustrated and annoyed and feeling like an overenthusiastic TV evangelist, which is not my personality type at all. I have jokingly/not jokingly said to my family, "I've become the type of person I can't stand. I'm annoying myself."

This is so frustrating.

[Cara in Boston]

A negative biopsy does not mean you DON'T have Celiac.  It only means damage was not found.  This could happen for several reasons, the most common is they just happened to biopsy a spot that did not have damage.  It is often missed.  You also might not have enough damage to show up yet.  Some doctors wait until you do to give a diagnosis.  This is crazy.  If you were pre-diabetic, would the doctor tell you to just continue on until you develop diabetes?  No, you would change your diet and change your life.  Sounds like you've had a positive blood test and a positive response to the gluten free diet.  That should be enough to diagnose you.

After my son was diagnosed (positive blood and biopsy) I was tested.  I had a positive blood test.  I had been in and out of my doctor's office for years with a variety of symptoms (insomnia, heart palpitations, dizzy spells, headaches, etc.) and had GI issues that I just thought were part of getting old.  Once I saw my blood test results, I went gluten-free too and all symptoms vanished.  It was like I was a new person.  My biopsy was negative, so my first doctor simply said I didn't have celiac disease.  When I asked about everything else (son diagnosed, symptoms, blood, etc.) he said they must just be a coincidence.  Started to go to the specialist treating my son and she said that was ridiculous.  Of course I have it too.  The biopsy can only confirm the diagnosis . . . it cannot rule it out.  That so many doctors still use it as the "gold standard" is very frustrating.

If you need a diagnosis, I would find another doctor who is more up to date on current testing standards.  There is also something called "non Celiac Gluten Sensitivity" where you have all the symptoms, but test negatively.  My current doctor considers "response to gluten-free diet" as a huge indicator . . . more reliable than the biopsy for whether or not a person is sensitive to gluten.

[Debra N]

Hi Shannon,

My mother is an RN and since I was misdiagnosed with GERD and IBS I wanted to get tested after trying every single Antacid including Pepsid. If you are allergic to gluten, you have symptoms of Celiac disease and the only cure is of course Gluten Free. Please don't spend hundreds of dollars on OTC meds for heartburn. Especially if they are giving you heartburn. My mother follows up with medical news and reads the AARP magazine. She told me that the test for Celiac disease here in the U.S. is not adequate. The real test is in Europe where they have stricter standards. Unfortunately I cannot go there right now. 

About Italian food. I'm sorry you may have to leave the restaurant. Have you tried a nursing mask to filter out the flour, wearing gloves, and then showering when you get home from your restaurant? Also if you love italian food Barilla is now selling Gluten free pasta. They were two different kinds for $4 (buying two at once saves money). You can also buy Gluten free flour in bulk from some companies like Bob's Red Mill which is actually a store started here close to Portland Oregon. 

My advice is this. You may be able to help yourself and your customers. Look up www.bobsredmill.com/gluten-free and see if something there interests you. You may be able to offer Gluten free dishes to your customers and increase your business. 

Some people think this is a fad. I was very sick and found out at the store when the cashier did not take me seriously. I started losing weight, having headaches, was very bloated, pale skin. I even had to quit my job after throwing up morning after morning. I thought I was going to die. I was so tired and frail. Did I ever really have Fibromyalgia? did i really need to be on Prescription Lyrica and take opiates? Those are things I am wondering now that I am getting better. Thank goodness I found out the truth. I am almost back to normal with my stomach healing. 

Also, don't worry about what others think. Get out there and get yourself some Gluten free cornbread, Bisquick pancake and baking mix, try the bob's red mill. You should know by now after being sick with other symptoms that most people don't understand these types of illnesses. Don't let them drain you of your confidence in what you are doing. Read labels and understand that you have an allergy. If you feel better when you do not eat wheat of things made with wheat you have Gluten sensitivity which could range from mild to severe. In your case it seems severe and some people can die from it. People have egg allergies, shellfish allergies, environmental allergies and so on. Why can't they accept Gluten allergy? 

[shannon79]

22 minutes ago, Cara in Boston said:

 That so many doctors still use it as the "gold standard" is very frustrating.

This is literally the EXACT words my GI doc used when he recommended the endoscopy/biopsy. I don't think that bodes well...

[squirmingitch]

3 hours ago, Debra N said:

Hi Shannon,

My mother is an RN and since I was misdiagnosed with GERD and IBS I wanted to get tested after trying every single Antacid including Pepsid. If you are allergic to gluten, you have symptoms of Celiac disease and the only cure is of course Gluten Free. Please don't spend hundreds of dollars on OTC meds for heartburn. Especially if they are giving you heartburn. My mother follows up with medical news and reads the AARP magazine. She told me that the test for Celiac disease here in the U.S. is not adequate. The real test is in Europe where they have stricter standards. Unfortunately I cannot go there right now. 

About Italian food. I'm sorry you may have to leave the restaurant. Have you tried a nursing mask to filter out the flour, wearing gloves, and then showering when you get home from your restaurant? Also if you love italian food Barilla is now selling Gluten free pasta. They were two different kinds for $4 (buying two at once saves money). You can also buy Gluten free flour in bulk from some companies like Bob's Red Mill which is actually a store started here close to Portland Oregon. 

My advice is this. You may be able to help yourself and your customers. Look up www.bobsredmill.com/gluten-free and see if something there interests you. You may be able to offer Gluten free dishes to your customers and increase your business. 

Some people think this is a fad. I was very sick and found out at the store when the cashier did not take me seriously. I started losing weight, having headaches, was very bloated, pale skin. I even had to quit my job after throwing up morning after morning. I thought I was going to die. I was so tired and frail. Did I ever really have Fibromyalgia? did i really need to be on Prescription Lyrica and take opiates? Those are things I am wondering now that I am getting better. Thank goodness I found out the truth. I am almost back to normal with my stomach healing. 

Also, don't worry about what others think. Get out there and get yourself some Gluten free cornbread, Bisquick pancake and baking mix, try the bob's red mill. You should know by now after being sick with other symptoms that most people don't understand these types of illnesses. Don't let them drain you of your confidence in what you are doing. Read labels and understand that you have an allergy. If you feel better when you do not eat wheat of things made with wheat you have Gluten sensitivity which could range from mild to severe. In your case it seems severe and some people can die from it. People have egg allergies, shellfish allergies, environmental allergies and so on. Why can't they accept Gluten allergy? 

Please do not use the word allergy for celiac disease. Celiac disease is not an allergic reaction. It is an immune response which is very different from an allergy. There are people who are allergic to wheat and there are celiacs who have immune responses to wheat, barley & rye and then there are some celiacs who are also allergic to wheat. 

[bartfull]

Also Debra (I am not trying to pile on you here, just trying to educate ) A mask and gloves and a shower after work still won't cut it if you're working where there is flour dust in the air. There have been several folks here who had to quit bakery or pizzaria jobs because it's just too dangerous.

And i think when you mentioned buying gluten-free flour in bulk you meant in large quantities because it's cheaper, right? That's cool if you bake a lot. But buying from bulk BINS in a health food store is a bad idea because often these things are near gluten flours and it's just too easy for them to get contaminated by flour dust or someone using the wrong scoop.

The diet really does become easy over time but we DO have to stop and think about most purchases we make.

[Galixie]

From what I understand, gastritis and low stomach acid tend to go hand in hand. Strangely, low stomach acid often has the same symptoms as too much stomach acid. I wonder if the antacids gave you heartburn because they were reducing an already too low amount of acid?

Having gastritis is definitely something to keep an eye on. It can put you at a higher risk for stomach cancer.