Negative Biopsy. Very Confused!

[pah77]

I've had digestive issues for years. I had ulcers at 19, gallstones at 21, had gallbladder removed at 27, recurring reflux for the last ten years. I've been diagnosed with chronic gastritis and GERD, but PPIs haven't helped. I started getting worse about 2 years ago, frequent infections, fatigue, parasthesias, etc...then they found I had atherosclerosis at 28, i felt like I was falling apart. Then this spring I had a bad viral infection and after that I just kept getting worse, muscle cramps, pain, tingling and numbness, terrible fatigue...I had a million tests done and everything was "normal". I saw 5 different PCPs and specialists, and was diagnosed with a 'relapsing viral infection' and CFS. Went to see a new gastro in October and he suggested testing for Celiac, I went online and checked the symptoms and I had every single one except weight loss (I had actually been gaining weight).

The panel came back and my IgA was normal, but my IgG anti-TTG was very elevated. I had genetic testing and it was positive. But then the doctor did a biopsy and it was negative. When I saw him he said he still wanted me to go on the diet, and then retest, but he was very reluctant to say I have Celiac disease. I did start the diet but I'm still very weary, what if he's sending me in a wild goose chase? I'm afraid I might be wasting my time while something more serious might be going on. Also, I'm concerned about never having a definite diagnosis...b/c of insurance and other issues involved...I called my insurance to ask if they would cover a dietitian and they said I had to have a diagnosis first, and I feel like I can't do this diet w/o help...it's all so overwhelming!

Sorry for ranting...I just don't have anyone who can understand what I'm going through.

[ravenwoodglass]

There are lots that understand here. If your bloods were positive you do need the diet. Hopefully the doctor explained how easy it is to miss celiac changes in the biopsy process. Damage can be patchy and can be beyond the reach of an endoscope, you have 22 ft of small intestine, or the path that read the biopsy could have missed the changes that are seen before the villi are totally destroyed. Do please get yourself gluten free. It is tough at first but the difference in the way you feel is well worth the trouble of leaving the gluten free lifestyle.

[lizard00]

I can only echo what ravenwoodglass said. Accuracy in the testing for celiac is less than ideal. While elevated IgG anit-TTG can be associated with other AI diseases, most often it correlates with celiac.

But, it sounds like your doctor knows this, and his suggestion to go gluten-free indicates that, even without the IgA and biopsy, it's very likely that gluten is the cause of your ailments. Good for you!! Give it a go, you have nothing to lose, except maybe your health woes.

Ask any questions. If there are certain things you feel like you can't live without, post. We'll help you either make it or find it.

Welcome to the forum!

[pah77]

Thanks for your posts! I feel a little better now that I have a place where I can ask questions and find support.

[caek-is-a-lie]

If I understand the diagnostics, a positive biopsy would show up in advanced stages of Celiac. A lot of damage has to be done before they can find atrophied villi. They also might have happened to take it from a healthier part of your intestine and missed it. If you have positive antibodies, that should be enough indication that you need to go on the diet. Some of us don't test positive for Celiac but have all the symptoms and then some, and find we improve dramatically when we go gluten-free.

The nice thing about the diet is you can choose to do it yourself, regardless of what doctors might say to you. The only way to know if it works for you is to try it. Some of us find that it works so well, we don't want to go back on gluten just to get tested.

I also gain weight when I eat gluten; the losing weight symptom isn't universal. I can exercise for months on end and not lose a single pound on gluten, but when I go gluten free, the weight just falls off. I've lost 10 lbs since going 100% gluten free last month. Go figure.

[Worriedtodeath]

Please be advised that it may take months to feel better or get well. I wanted to say that so you don't get discouraged if you don't feel better in a few weeks.

My baby became very ill and still tested negative on blood and biopsy. My mom told me I was like that as a child. Clingy, whiny, grumpy, sick, tummy problems all the time. Identical to the baby. Out of lack of anything else to do, we put her and the rest of us on a strict gluten free diet. The diet response was overwhelming positive for everyone but me. Until just recently.

I have been the sickest for the longest. All the childhood issues and then as a teenager 6 straight years with daily tummy upset. Drs labeled it as stress. In my 20's, the chiropractor said I had huge holes in my hips and had bone loss. At 23, I stopped having daily d but came down with some type of swollen joint issues (never did come up with anything as to what it was) and I was labeled with chronic fatigue. I was super skinny (think starving child look) and then became fat. It's been downhill every since then Bone pain, joint pain, swelling, extreme fatigue, severe mood swings, dry skin (Would crack and bleed even in the summer), large clumps of hair loss, no way could I grow fingernails or toenails (splinter and break off) and the continual stomach issues ranging from days of d to days of none. Most days I just laid on the couch or tried to make it thru the day somehow. After all, moms are always tired, right? Or at least that's what all the drs around here say.

Then the baby's issues started. And we found our way here. We went completely gluten-free. Only fruits, only veggies and lightly seasoned plain meat for 2 months straight. THen we added in some gluten free snacks like cookies and cakes once or twice a week and then some pancakes. We still do that.

It's been almost 11 months. THe baby is completely better and almost back to her normal growth curve before she got sick. For me it's been much slower. Around 6 months, the bms normalized to like one a day and one that had form. I started feeling not so tired. IN fact yesterday I cleaned the tub ( I haven't been able to do that in 6 years), waxed it, cleaned the shower liner, scrubbed the floor and did that all over again in the kids bathroom!! Today, I am sore and took it easy out of habit but have not been tired today or stuck in bed all day. I have the prettiest toenails. I have never had toenails. I look like I had a pedicure. My heels are not cracked and are almost completely smooth instead of craggy. My skin is soft and lost all those dry wrinkles. My hair is not coming out so fast but I think it may be an underlying problem like lack of iodine causing that. I had great looking fingernails without hang nails until yesterday's tub cleaning. I'm starting an exercise program tomorrow because I believe I might be able to do one instead of being knocked out for 2 or 3 days from exercise. I'm looking forward to the new year to see if I might actually be well this coming year.

ANyway, just wanted to say that a definite on the test isn't necessary and not to give up as it may take a long time before you begin to see results

And I think most drs don't want to dx this. For some reason not having a sandwich is consider a sentence worse than death. They must teach that in medical school. Living without wheat is a death sentence. Your patients would rather be sick and miserable than not eat bread. LOL!

Do the diet. Get better!

Stacie

[rinne]

If I understand the diagnostics, a positive biopsy would show up in advanced stages of Celiac. A lot of damage has to be done before they can find atrophied villi. They also might have happened to take it from a healthier part of your intestine and missed it. If you have positive antibodies, that should be enough indication that you need to go on the diet. Some of us don't test positive for Celiac but have all the symptoms and then some, and find we improve dramatically when we go gluten-free.

The nice thing about the diet is you can choose to do it yourself, regardless of what doctors might say to you. The only way to know if it works for you is to try it. Some of us find that it works so well, we don't want to go back on gluten just to get tested.

I also gain weight when I eat gluten; the losing weight symptom isn't universal. I can exercise for months on end and not lose a single pound on gluten, but when I go gluten free, the weight just falls off. I've lost 10 lbs since going 100% gluten free last month. Go figure.

As I understand it, the Marsh Scale is how they read the biopsy and according to it there are four stages to the destruction of the villi, they see the damage at the third stage but once you hit the fourth stage you may never heal. It baffles me that they consider it the gold seal for testing when it is obvious that you can be sick and tested during the first and second stages and they won't even see it!

I didn't fit the profile of the supposedly typical celiac either, I gained weight when I ate wheat.

Dietary changes can bring enormous relief but once we are really ill then it takes time, this is a great site to hang out on while you are healing and beyond. Welcome.