Questions About Biopsy

[gabyy]

Hi, I am not new to this forum, but last posted about a year ago. I have some gi symptoms -mainly gas and bloating which occur after eating gluten, but also occur after eating fruits and vegetales. I also get occasional heartburn. The symptoms were more annoying than anything else, and I never really thought to see a doctor about it. My doctor had me get the "celiac blood panel" bcause my ferritin levels are constantly low, even while on iron supplements. I think the highest my ferritin level has been is 26, the lowest is 2. I originally posted right before getting the bloodwork done last September. The bloodwrok came back negative, and I did not really think much more about Celiac disease.

I get CBC and ferritin levels done every few months, and I saw my doctor about my most recent results yesterday. My ferritin level is down to 5. He has reffered me to a gi doctor and wants a biopsy done to be absolutely sure I don't have Celiac disease. I have no objections, but I was wondering if anyone has had negative bloodwork but a positive biopsy? If so, how often does this happen? I have autoimmune thyroid disease, eczema, psoriasis, and am half Irish, half Italian. I understand that all of these factors mean I am at slightly higher risk for Celiac. Here is my Celiac Panel results from last September if that helps:

Endomysial Abs, S (IgA) My Result: Negative Expected Result: Negative

Gliadin Ab IgA My Result: 5.8 Expected Result: < 25

Gliadin IgG My Result: 5.1 Expected Result: < 25

I understand that an IgA deficiency may lead to inaccurate blood results - I am not sure if any of those blood tests measured the amount of IgA I have. Also, I guess I am lucky in terms of doctors, mine is really pushing for the biopsy, and even suggested that if it is negative, to try gluten free and if my iron levels increase, he would consider that proof that I have Celiac. I am not sure that I will go that route though if it is negative - I love all the gluten rich foods! Anyway, any help is appreciated. THanks, Gabyy

[ravenwoodglass]

You have got a very good doctor there and I sure do hope you listen to him. Your doctor, in your circumstances, is very justified in saying he thinks you should go gluten free regardless of the outcome of the biopsy. I am surprised to hear he recognizes that celiac can be the problem despite a miss on the biopsy. Damage can be spotty and with 22 ft of sm intestine it can be easy to miss. The gluten free diet can be a bit to get used to but it can save your life and your sanity. In some of us the damage to other organs before severe GI problems develop can be severe and permanent. Many of us don't realize how many systems are impacted and how severely our brains are being attacked until after we have been gluten-free for a bit. I hope you listen to your doctor and that you are aware that your dependance on gluten foods is also a sign of intolerance, we often form an actual addiction to things that poison us.

[par18]

Hi,

Like other posters your situation is not as straightfoward as you would like. You have had a negative blood test and a doctor wanting to do a biopsy. Even if it (biopsy) is negative the doctor is leaning toward you trying a gluten-free diet. What would happen if you did this (try diet) and get a positive response? Would the doctor be willing to give you a positive diagnosis only on a diet response? Blood/biopsy testing in itself is not an exact science as there has been just about every combination (positive/positive, positive/negative, negative/positive, negative/negative). The only real constant is diet response. You either respond or don't respond. Say everything is negative (blood/biospy) yet you try the diet and it works. Are you going to stay with it or start searching for other possible causes to your problems? Would it take only a "postive" result (blood or biopsy or both) to get you to even try the diet? Only you can answer these questions. Good luck.

Tom

[dadoffiveboys]

I had similar symptoms to yours - and the only test with anything I got was an IgA level was 48. <25 was normal and >50 was abnormal.. 25-50 was equivocal (This lab was from the Mayo Clinic lab.) I had like 20 biopsy's done - intestines, stomach and esophagus and came back with GERD and gastritis.. no signs of 'celiac'. If you see any of my other postings.. you will find that myself.. ALL FOUR of my boys and my father are allergic to gluten (or gluten intolerant.. not sure if there is a difference). My dad - misdiagnosed with heartburn for 30 YEARS.. H. Pylori infection, stomach valve damage, kidney failure, neuropathy, high blood pressure.... probably caused by this. The H. Pylori was cleared a while ago via antibiotics, the stomach valve damage is permanent, the kidney damage (40% kidney function now) is permanent - we are hoping for recovery though. The other things, reflux, high blood pressure, neuropathy and fatigue are COMPLETELY GONE following months of a gluten-free diet... and he's off ALL HIS MEDICATIONS! (YAY). Myself and my sons are off all reflux medicine, asthma medicines - free of all rashes and ezcema. So you can see that there is nothing better than the gluten-free diet.

Incidentally we had an accidental gluten exposure from the tostitos being contaminated (go flour tortillas from frito lay contaminating the corn torillas ) and myself and two of my sons that ate it got rashes all over but we don't have DH or celiac so go figure.. but I see that as a clear sign of our intolerance to gluten.

BTW.. my good doctors did label me as having a "Gluten Allergy" but NOT "celiac disease" from the dietary response - it was so OVERWHELMINGLY positive I don't think they can ignore it You all can tell me what the heck the difference is - if any.