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Weird Testing Progress. Even Doctor Baffled.

Cara in Boston

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Cara in Boston Enthusiast
Cara in Boston
Posted

Here's my (ongoing) story. Couple of months ago, my son (5) was having stomach aches and we had noticed a dramatic change in behavior. His doctor gave him a blood test for celiac and he tested positive on a couple of them, but not all. He also was tested for the gene and he has one. We are still waiting on the next steps for him. He is still eating gluten, but not complaining of any discomfort. His behavior is still challenging and not at all what we have seen for the previous 5 years.

Anyway, in the meantime, I got myself tested and my older son. In reading about celiac disease I realized I have had many of the symptoms (even been to various doctors about them) over the past 5 years. Everything was always unresolved, but would eventually go away. Some symptoms come and go regularly. My test came back positive.

I got an appointment with a Celiac specialist for Monday, 2/28. Right after Valentine's Day, I decided to try going gluten-free because the following week was the kids' school vacation and I really wanted to feel good (have energy, no brain fog, etc. etc.) So I went gluten-free. The brain fog went away immediately. Other than that, it seemed my other symptoms got worse. On top of that I had a terrible headache for days (withdrawal?).

When I saw the doctor on Monday, he said the blood test results alone were enough for a diagnosis and combined with my symptoms, he was certain I have celiac disease. He scheduled me for an endoscopy two days later and took blood samples that day. I told him I had been gluten-free for about 10 days and he said that was not long enough to change the outcome and that I should go home and eat lots of gluten for the rest of the day and the next day in anticipation of the scope.

I went home and had some delicious French bread and my headache was gone within 30 minutes and I felt pretty good. I was kind of expecting to get some serious GI symptoms because I had been gluten-free but I continued to feel good the rest of the night and the next day.

On Wednesday (yesterday) I still felt great. Went to my endoscopy appointment, everything went well. Before the procedure, the Dr. tells me he is confused by my blood test from Monday; it was perfectly within normal limits (the previous test was way off). The scope was scheduled just to have a starting point to monitor my progress, not really for a diagnosis. Anyway, after the procedure, he told me everything looked perfectly fine. No damage at all. He said it would be impossible to heal like that with only 10 days of being gluten free. He said in all his years working with celiac disease he has never seen anything like this and can only assume that the original tests were somehow incorrect.

He is a leading specialist in Celiac Disease, so I trust that he actually has seen lots of cases and that he is up on the most current information. He seemed genuinely baffled by his findings.

The weird thing is that it really did explain all my strange symptoms, and with my son having tested positive for (at the least) a gluten sensitivity, maybe more, really, what are the chances that this was some kind of mistake?

The doctor hasn't given up. He wants me to eat gluten for 3 months and then come back in for more blood tests. While I know I should be glad I may not have to change my diet, I was sort of happy with the diagnosis because it explained so much and gave me hope of feeling good again in the near future. I am not looking forward to waiting three more months.

He also did a biopsy, and will call me with the results but he said from the visual inspection, everything looked healthy.

Also, now I'm kind of grossed out by gluten. Even though I wasn't gluten-free long enough to feel good, I really don't have any desire to eat it. I have to consciously remember to include it. This will be a long three months.

Has anyone had a similar experience (reversal of test results) after such a short time being gluten-free? And if I really did somehow heal that quickly, wouldn't I have felt better while gluten-free?

I know I shouldn't have changed my diet. I was bad. I was impatient.

Is it weird that I am secretly hoping something will show up in the biopsy that will confirm the diagnosis? My husband thinks I'm crazy to "want" to have Celiac.

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confused mom Rookie
confused mom
Posted

Something similar happened to my daughter. She was having terrible stomach aches for about a month and her pediatrician sent her to a GI specialist. She tested positive for Celiac but her biopsy from the endoscopy was negative. So he's calling it "Latent Celiac," meaning it hasn't actually affected her yet. She also tested positive for the gene. He wants her to continue with gluten-free indefinitely. It's frustrating because he says that since it's "latent," that the Celiac isn't the cause of her stomach aches. The cause is irritable bowel syndrome and constipation. I am leary of having her go gluten-free for the rest of her life if she doesn't really need to. I can understand your hoping for a Celiac diagnosis. If you felt better going gluten-free, then you should continue it. Maybe you have latent Celiac as well.

nora-n Rookie
nora-n
Posted

On another forum, there was this man who was very ill from celiac, had positive endoscopy, and went strictly gluten free.

Because of celiac-related health problems, he was back in hospital (he had edema from lack of nutrients) and then they did another endo (different hospital) and it was normal , and this was just four or six weeks after, I do not remember. The second hospital denied he had ever been celiac.

He used to tell that story to illustrate that one can heal prety wuick.

In fact, the lining of the intestines is amongst the quickest healingparts of the body. Just think of what happens if you bite something in your mouth.

And, it is often after serious stress that one develops celiac, bout all the time before, the body was able to heal after eating gluten, but during stress it was not--but all along one was intolerant to gluten.

the antibody test will only be positive after severe cell damage. That is what it detects. So when the body is able to heal the villi after just some days like after you bit your mouth, then there won

hnybny91 Rookie
hnybny91
Posted

Something similar happened to my daughter. She was having terrible stomach aches for about a month and her pediatrician sent her to a GI specialist. She tested positive for Celiac but her biopsy from the endoscopy was negative. So he's calling it "Latent Celiac," meaning it hasn't actually affected her yet. She also tested positive for the gene. He wants her to continue with gluten-free indefinitely. It's frustrating because he says that since it's "latent," that the Celiac isn't the cause of her stomach aches. The cause is irritable bowel syndrome and constipation. I am leary of having her go gluten-free for the rest of her life if she doesn't really need to. I can understand your hoping for a Celiac diagnosis. If you felt better going gluten-free, then you should continue it. Maybe you have latent Celiac as well.

Please do not think that she can go back to eating gluten just because it hadn't damaged her intestines yet. You have been given a GIFT of a diagnosis without your daughter having to endure YEARS AND YEARS of misery. Many of us wish we had been given that gift. Please do not throw that away. She needs to stay gluten free FOR THE REST OF HER LIFE.

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