Is This Really Celiac?

[Aeva]

Hi there,

I've been struggling with gastro symptoms since age 6 (now being 18), and none of the multitude of doctors I've seen have been especially helpful. Over the last 12 years I've had a colonoscopy, endoscopy, x-rays, stool tests, blood tests, lactose intolerance tests and specialized diets, none of which helped or provided any answers. Four or five years ago, celiac was suggested. Having several friends afflicted, I knew the drill. After about 6 months of a totally gluten-free diet, I was still having at least twice weekly diarrhea. I gave up. Sick of going in circles with every new doctor I was sent to, I simply accepted that this was the way it was going to be. Having several other (although more minor) life-long illnesses, I'd gotten used to the idea that I was just broken. However, a new health issue had arisen, and my specialist gynocologist (who has treated me since age 5 and knows well of my tummy troubles) had done a battery of blood tests.

When she called, she sounded almost astonished. I don't know my results off-hand, but she did say that I displayed both the trait for celiac, as well as the highest result she'd ever seen in one of the other areas. However, all others were within normal range. I have been back on my strict gluten-free diet for a little over two weeks now, and am actually having diarrhea even more often than I had been (since my childhood it has calmed down to maybe once every two weeks or so, although I do have what my boyfriend calls "bubble guts" after any meal". I am also doubtful of this diagnosis because, as I mentioned, this diet has not helped in the past, and my endoscopy did not show anything abnormal. Even though the endo was several years ago now, I had been displaying strong symptoms for at least 8 or 9 years beforehand. I feel like at least something would have seemed amiss if this really is celiac. I have never seen any correlation between eating foods containing gluten and my symptoms. I tend to react to things like chocolate, caffeine and strong citrus, as well as more around "that time of the month" and when I first wake up, all of which are classic IBS. But what about the test results. Should I go for another endoscopy?

Any opinions?

[Marz]

Hi there,

After about 6 months of a totally gluten-free diet, I was still having at least twice weekly diarrhea.

You'll find from reading the responses on this forum, it can take a few months for your gut to heal.

And writing from personal experience, you could have other food intolerances/allergies that are causing the diarrhea. I don't have a celiac diagnosis, am also trying gluten-free for the first time. But from keeping a food journal for a few months a year ago, I know that chicken, turkey and egg causes violent diarrhea between 2 hours and 2 days after eating it. I would never have picked up this problem without seeing the results every single time. Lots of celiac sufferers are also intolerant of soy, caisen in milk, corn etc. If it's only happening twice a week or so, it could be something you're occasionally eating, and not picking up the connection because it's a very delayed reaction. I don't get nausea/ill from eating chicken, just the colon exploding on me

I'd therefore highly recommend you keep track of every single thing that enters your mouth, and stomach problems, in a food journal. Or you can try an elimination diet - where you go on a bland diet with "safe", non-processed foods, and see if you feel better. After you feel better (confirming that the problems are food-related), you can start adding *one* food group at a time, challenging with lots of the item. If you get sick = you know that's a problem food. You then wait a week with your "safe food" list, to let your stomach recover, and then challenge a new food group.

When she called, she sounded almost astonished. I don't know my results off-hand, but she did say that I displayed both the trait for celiac, as well as the highest result she'd ever seen in one of the other areas.

I assume trait for celiac is the gene test? What was the high result that she saw? You can post your results here if you'd like - lots of helpful people with a ton of experience at reading blood tests here

[Aeva]

No, the high test she saw was not the gene. She said I displayed the gene in addition to having an extremely high result in another area. I don't have a copy of the labs, so I don't know exactly what was high and what was normal, but I will be seeing her in a few weeks and will ask for a copy then.

[Fey]

No, the high test she saw was not the gene. She said I displayed the gene in addition to having an extremely high result in another area. I don't have a copy of the labs, so I don't know exactly what was high and what was normal, but I will be seeing her in a few weeks and will ask for a copy then.

From what I've seen in this board so far, it's common to feel worse on the diet before you feel better. If any of your tests were high enough to concern/impress your doctor, it suggests there's a lot of damage already done to your system, which means your immune AND digestive system are affected, not to mention neurological, dermatological and other complications linked to celiac disease/gluten intolerance.

I started the gluten-free diet recently, and have had lots of ups and downs, and it's hard when symptoms you never had before, or haven't had in a long time, appear AFTER you go gluten-free, but it's part of the healing process, and consequences of long-term immune system complications.

And if your doctor does diagnose celiac, even if you feel worse without gluten, you have to remember that some of the complications (GI cancers) could happen after years of "silent" symptoms. Stay gluten-free, eliminate as much of other allergens as possible, and slowly rebuild your diet.

[Matisse]

I don't have a copy of the labs, so I don't know exactly what was high and what was normal, but I will be seeing her in a few weeks and will ask for a copy then.

My doctor's office will fax me the lab results when I ask. Most copiers have faxes. It sounds like it would be really helpful for you to have the actual results now so you'd be better informed about what you are experiencing. Then you could do a web search and/or post them here to get more info. Short of that, maybe someone at your doctor's office would give the actual tests names and results to you over the phone, so you could write them down. That's what I would do anyway.

[Aeva]

My doctor's office will fax me the lab results when I ask. Most copiers have faxes. It sounds like it would be really helpful for you to have the actual results now so you'd be better informed about what you are experiencing. Then you could do a web search and/or post them here to get more info. Short of that, maybe someone at your doctor's office would give the actual tests names and results to you over the phone, so you could write them down. That's what I would do anyway.

I will call and ask tomorrow. She has very odd office hours, so it's not always easy to get in touch with her. It took her a week to get back to me after I returned her call saying that my results were in! But thanks for all the great advice guys, and I will definitely post back here when I know the exact numbers. It is also not so astounding that she has not seen results higher than mine though. She is (very) specialist gyno, so she doesn't see that many celiac patients anyway. But yes, I agree, and am willing to try anything to get whatever I have under control.

[T.H.]

I felt much worse on a gluten free diet than I ever had on one, though I had a definitive celiac disease test results.

My doc said that it's pretty common to have OTHER food issues on top of celiac dieseae, and they often flare up when you go gluten free. Or you notice the symptoms more. A food journal, and eliminating the foods that you seem to notice are a problem, might be helpful, yes?

Also, the other food issues? Those might be related to the celiac gene, whether or not it triggers, so just having the gene may put you at a higher risk for intolerances, allergies, and sensitivities to foods. The intolerances? There are only tests in existence for fructose intolerance and lactose intolerance. The others, you just get to cut them from your diet, see how you feel, and then try them again to see if you react.

So most doctors won't even bother looking at this as an option.