Confused About Test Results

[silk]

Four years ago after suffering for many years with illness and stomach pain, I finally went to the doctor seeking an answer. After many tests that left me with no conclusive answers the doctor suggested that it might be Celiac Sprue. I had never heard of this so I went back to my office and got on the internet and found your wonderful website and what seemed to finally be an answer. Given that I am a type one diabetic and have several of the other markers for Celiac, I decided to try a gluten free diet. The results were amazing. Within a week I was feeling better than I had for a very long time so I went back to the doctor who said we could test for Celiac but looking at all of my symptoms and health history and the positive reaction to removing gluten from my diet, he felt that we were looking at a DX for Celiac and that there was probably no real need to go any further with the testing.

I have been gluten free for 4 years. During that time, I have found that all three of my daughters react to gluten, as do at least one of my grandchildren. I also discovered that my father, all of his siblings and his father all had stomach problems. My father tried eating gluten free when he visited my home for a month and felt so much better. He has reverted to eating gluten now and is back to popping Zantac like candy. Heavy Sigh!

My reason for posting here is that my youngest daughter recently began to have severe lower abdominal pain. It was intermittent but since she is strictly gluten free, did not seem to be related to the Celiac. After going through numerous tests with her, they finally did a colonoscopy and and endoscopy with biopsies of the upper and lower end last week. They had suspected that she might also have Crohn's as they often see that in older children with Celiac.

Her results showed absolutely no problems visually. No indications of Crohn's or Celiac or any other problems. We have not heard back about the biopsies but the doctor did not feel that they would find anything there. I asked if she would even see any sign of Celiac since my daughter has been gluten free for over a year. She said that she thought there would be some indication of change if she actually had Celiac. I asked where we go from here and she off-handedly said maybe she had IBS.???

My questions are: If she has been gluten-free for over a year, would there still be visible signs in the colon? Do you see people with Celiac that also have IBS. I know that I suffer from the same symptoms that my daughter was experiencing but it has not been as frequent since I have been gluten-free and if she truly does not have Celiac, should I be questioning my own diagnosis of the disease? What is the difference between Celiac and Gluten Sensitivity? I know primarily that Celiac is an auto-immune disease and that gluten sensitivity is more of a digestive issue but I have also heard that the end results when left untreated are pretty much the same. I would really appreciate some insight and advise. My daughter is 16, and after having already accepted that she has Celiac and dealing with it pretty well for a kid her age, she is now very confused about the results of her tests and what is happening to her and feeling very discouraged.

[seashele2]

I have been diagnosed for 7 1/2 years. (Undiagnosed for 32 yrs before that.) My diagnosing physician, who is also celiac, said that any celiac who is gluten-free would have negative results on labs and endoscopes. Sometimes people who were undiagnosed as long as I was sometime have residual damage, but a young person should completely heal on a gluten-free diet over a few months.

My daughter is now 18 1/2 and we removed gluten from her diet 4 years ago when she had undeniable symptoms. Her new gastroenterologist wanted her to go back to eating gluten so he could test her and get an "official" diagnosis. He said as long as she was gluten-free, he wouldn't be able to tell anything. My daughter, her primary care doc and I all said "no way!" She didn't want to spend her last summer before moving to college sick in bed.

Based on what we've been told over the years, if your daughter has been gluten-free, she would show no positive celiac results.

[Roda]

Have you had her evaluated for ovarian cysts? They can cause lower abdominal/pelvic pain.

I would explain to her that her tests are going to be negative because she has been gluten free for a year. Hopefully that will help.

My oldest son has been gluten free for about three months now. All testing he has had over the past three years is negative. We finally decided to try him gluten free after he had his scope. All I can say is wow! He has gained 6 pounds and is starting to grow. Since all his testing is negative, I agreed to let him do a gluten challenge during Christmas break(IMHO, I don't think it will go well). This is something he and his dad need to do. He said to me the other day that he wasn't sure he wanted to eat gluten again and gluten free wasn't that bad. I told him that it was his decision. He told me that he was liking the fact he was growing. Ahh, it tugged at the heart strings. We decided to wait until the day after Christmas so he wasn't miserable for Christmas. He will have a week of break left, so we should have an answer to our question and something to report back to the GI doc.

[Takala]

We have not heard back about the biopsies but the doctor did not feel that they would find anything there. I asked if she would even see any sign of Celiac since my daughter has been gluten free for over a year. She said that she thought there would be some indication of change if she actually had Celiac. I asked where we go from here and she off-handedly said maybe she had IBS.???

A doctor is always going to give the answer that makes sense from an insurance reimbursement point of view in the U.S. "Reason for doing test" = "suspected disease xxx" whether or not that actually makes any sense. In this case, a good guess is that this being a teenager, she probably thought a gluten free diet was not actually being adhered to, and there was cheating ongoing. They don't get that people who are made really sick by certain food, can be highly motivated to not make themselves sick by not eating it. If it is a gluten problem, (celiac) then almost all of the time there is healing when gluten is eliminated, and that is possible over a year's time.

"IBS" is just a BS catch- all diagnostic phrase for "I have no idea, but something is wrong in the digestive track with this patient that doesn't show up in tests."

....should I be questioning my own diagnosis of the disease?

No, not if you feel better eating gluten free, which you said you did. "amazing"

What is the difference between Celiac and Gluten Sensitivity? I know primarily that Celiac is an auto-immune disease and that gluten sensitivity is more of a digestive issue but I have also heard that the end results when left untreated are pretty much the same.

Celiacs have positive test results.... gluten sensitives have doubts....

It is possible to have other, additional sensitivities to common ingredients in gluten free foods that can cause discomfort. The most common ones are to soy, like in soy flours and soy milks, and cow dairy, either the lactose or/and the casein, ie, the milk sugars or the milk proteins. But there can be LOTS of other ones, some that are not expected. And then there can be lurking cross contamination that you have trouble tracking down exactly what the culprit is. I am having an on and off secondary reaction to something that is being mysterious to track down. I know it's not a real gluten reaction because I'm not having what is typical symptoms for me, which are neurological, not getting the typical brain fog grogginess, the achey flu exhausted sensation, the eyes not crossing, dizziness, ataxia, loss of balance, arthritis flare up. My feet aren't swelling up, I'm not having to pee constantly, my nose isn't running badly. No rashes. In fact, this one on- and- off topical reaction rash I'd been plagued with, finally went completely away. (have I finally laundered all the clothes with the residue?) Oh, no, other than my gut is a bit treacherous, I'm otherwise okay. I have figured out what some of it was (I ate a commercially prepared gluten free baked product which was very tasty over Thanksgiving week, but it had some of my "should not eat much of these ingredients" like flax, and soymilk, and it hammered me) but not all of it. But I am looking at everything that is going into my mouth at this point, because there has to be something in my regular "okay" list that has changed, either the manufacturers are screwing up, or I'm missing something. And it could be as simple as I'm using ONE ingredient in baking that now doesn't work, or an over the counter supplement or drug marked gluten free still has a surprise ingredient.

It helps to keep a food diary and eat very simply while trying to track down one of these secondary reactions.

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edited in attempt to fix html failures... gaaaah ! one missing / slash mark

no, 2 missing / marks

[silk]

Thank you to all of you for your input and encouragement. Actually to answer one question, my daughter actually had an ovarian cyst rupture almost 2 years ago so we thought that was what she was dealing with again. Her pain took us to her GYN who did blood tests to rule out appendicitis and an ultrasound that was 'inconclusive'. She sent us for a CAT scan and while they noted that the bowel was slightly distended 'as though she may have recently had the flu'(which she had not), the doctor stated that they could find no obvious cause for her pain. So on we went to the pediatrician who did more tests and x-rays and could not find anything so she referred us to a pediatric GI, who suggested that we may be looking at Crohn's and sent us on to have the biopsies. I have to say that the surgeon who did the scopes seemed very uncaring and offhand about the whole thing. She suggested that it might be IBS and when I asked her what could be done for that she said diet. I asked if we could speak with a nutritionist who could help us with that and she said 'maybe...and spewed a few names at us' and then walked out of the room like it was no longer her problem.

It is comforting??? to know that my daughter would no longer show signs of Celiac because it did make me question my own situation. I grew up with frequent stomach pain (I remember laying on the wooden floor in our house while Neil Armstrong walked on the moon because my stomach hurt so bad and the cool floor made it feel better.) Of course, parents did not take their kids to the doctor for stomach aches back then, even when they happened frequently. My parent's diagnosis for me was that I was a hypochondriac..... I was also seriously under weight, had frequent mouth sores, which oddly enough the doctor told my mother often occurred after an upset stomach! Ha! I could go through a very long list of symptoms but as my M.D. stated, there are enough of them combined with the positive response to a gluten-free diet to conclude that I have the disease. Also, my kids were always severely underweight (the middle one was always at the zero percentile for weight and growth during her wellness checks as a child. Her official DX was 'failure to thrive' on every physical. And every one of them had the worst gas! A very nasty side effect of gluten!

I loved your comment about the difference between Celiac and Gluten sensitivity. Too funny and probably way too accurate. As for the IBS DX, that pretty much sums up what this whole process for us. The doctor has no clue what is going on so he pretty much just sends you on to be someone else's problem. I agree with you that we would probably be better off doing our own research to find out if she is reacting to something else. I don't think I will subject her to more test. They actually upset her more because it causes her to question what is wrong with her. All we pretty much got out of it is that at least we know she does not have a twisted or obstructed bowel and that we're not looking at cancer.

Thanks again for your help. It is so nice to have a place to go where people understand and sadly, have way more knowledge about this disease than any doctor I have met so far.

[Skylark]

My questions are: If she has been gluten-free for over a year, would there still be visible signs in the colon? Do you see people with Celiac that also have IBS.

A year is long enough for her damage to heal and the endoscopy to be normal. Remember, growing kids can recover from illnesses really fast. By the way, celiac damage is in the small intestine, not the colon.

As other folks have mentioned, IBS is a symptom, not a disease. Many people with celiac have other food intolerances as well as gluten that can cause a lot of GI trouble. Dairy is the most common, soy the second. Some of us feel better avoiding grains too.

[silk]

We got the results of our daughter's biopsies today which were negative. I expected nothing less after seeing the pictures from the scopes. What I DID expect was a more definitive plan from the GI. They had a nurse call with the results, who then said 'maybe you could remove dairy from her diet for two weeks and give us a call to let us know how that goes'.

Nothing quite like advertising WE HAVE NO IDEA WHAT IS WRONG WITH YOUR KID AND YOU'RE ON YOUR OWN! Very frustrated which is nothing compared to what my daughter is feeling. When I told her she would need to give up dairy, she begged me to wait until after the holidays and I agreed. Yes she is having pain, but it hasn't killed her so far and apparently the doctor is not concerned of her imminent demise so I see no point in restricting her diet even more than it already is.

I know that the doctors go through these tests and questions every day and to them it is just another test, just another diagnosis(guess), but they have to remember that every person who has that test is just as scared and concerned as the last one and needs to be treated with that in mind. The staff at the hospital we went to for testing was amazing and wonderful. The doctor needed a bran muffin! Oops, did I say that out loud? Actually maybe she had one and has a problem with gluten!

Still, as I said before, at least we know it is not cancer so I feel pretty safe in going it alone without having a doctor charge us to guess about what's going on with my daughter.

[silk]

A year is long enough for her damage to heal and the endoscopy to be normal. Remember, growing kids can recover from illnesses really fast. By the way, celiac damage is in the small intestine, not the colon.

As other folks have mentioned, IBS is a symptom, not a disease. Many people with celiac have other food intolerances as well as gluten that can cause a lot of GI trouble. Dairy is the most common, soy the second. Some of us feel better avoiding grains too.

I have a question about this...both my daughter and I seem to be bothered by brown rice and flax. I know that we need to have fiber in our diets but we both seem to have problems digesting it. I also realize that the purpose of fiber is to help 'cleanse' out the plumbing but if we can't handle fiber is there an alternative?

[Skylark]

I have a question about this...both my daughter and I seem to be bothered by brown rice and flax. I know that we need to have fiber in our diets but we both seem to have problems digesting it. I also realize that the purpose of fiber is to help 'cleanse' out the plumbing but if we can't handle fiber is there an alternative?

It's a myth that you have to eat grains for fiber. Fresh fruits and vegetables have plenty of fiber. Have a few prunes!

[silk]

It's a myth that you have to eat grains for fiber. Fresh fruits and vegetables have plenty of fiber. Have a few prunes!

Good point! I do tolerate celery pretty well but raw veggies like carrots and broccoli kill both of us. And apples are tough too. Also, to add insult to injury, my daughter has braces so that limits a bit what she can manage. She came home from school today and said that the pain was so bad this afternoon that she had to go to the nurse for tylenol. I asked what she had for lunch and she said 'a lettuce wrap'. She loves salad so I'm guessing we will cut the lettuce out for now and see if that helps.

[Skylark]

Cooking veggies makes them more digestible and the fiber is still there. Applesauce still has all the nice pectin.