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Yes, No, Maybe So
By sandi | June 11, 2010
Today Paul and I met with the GI doctor and the Nutritionist. The appointment started out well with them weighing Paul. He has gained 2.5 pounds since he last saw the doctor two months ago! This is huge growth for Paul. I believe this growth is due to his increase in appetite from controlling the gastritis.
We then met with the GI doctor who went over the results of all the testing. He said that it wasn’t a 100% diagnosis of celiac but he would like us to follow the diet. He said that everything shows it is most likely the problem. I was taken back by his words. When I spoke to him he said this was it, now he was saying he couldn’t definitively make that diagnosis. Here are the resons: 1st blood draw on a whole panel was negative for celiac, the biopsy results were 2 out of 3 indicators, and the last blood test for IGG was positive. He said if all three indicators had been there during the biopsy he would say it was 100% positive, but without that he could only say it was highly likely.
Celiac is a huge, life-altering diagnosis and not something to be taken lightly. I wanted to know if this was necessary for Paul. If this is necessary for Paul I have no problem following through on this lifestyle, but if it is a maybe I don’t feel so confident. I voiced my concerns to both medical professionals.
The nutritionist then began to cross examine the doctor and his diagnosis. He, like myself, didn’t think it was a prudent idea to live this way if not necessary. He was able to talk to the doctor and ask him questions regarding his weight, growth and gastritis. His professional opinion after all that the doctor said was that it was not a good idea to live this restrictive lifestyle unless we knew for sure Paul had this.
He then asked me if we had had the genetic testing done. I told him we hadn’t. He asked the doctor if it was possible to get that done. The doctor said that insurance companies rarely cover this first off but it can be covered if medically necessary. At this point we felt it was. So they sent us to have the blood draw and to decide if we wanted to live gluten free for the 2-3 weeks until the test came back or live with gluten.
The doctor felt that since it was possible that he could have celiac disease we should follow the course, though he would never give it a 100% diagnosis and he did agree that the weight gain could have been from the gastritis medication. The nutritionist felt that since there was not enough evidence to suggest that he had it, we should continue with normal diet. He said that even if he was a celiac two more weeks of eating gluten wouldn’t hurt him enough to warrant doing it just in case.
After much discussion and thought Bill and I have decided to go back to his normal diet. We will wait for the genetic test results and go from there. The genetic test has three result options: Yes he definitely has it, no he definitely doesn’t have it, and maybe he does maybe he doesn’t have it. We are hoping and praying that it is a clear yes or no answer. If it lands on maybe we will have to do gluten free just to be safe and retest him at a later date.
Topics: Celiac, Paul | 14 Comments »
June 11th, 2010 at 7:28 pm
Just thinking out loud here….is your GI familiar at all with malnourished kids? I’m just wondering because an IGG level is pretty nonspecific, a lot of things can affect that. And I’m completely unfamiliar with the tests associated with his biopsy but I wonder if the fact that he was under-nourished for so long, this would affect those indicators….since Celiac is a malabsorption disease that leads to malnutrition – maybe different things can mimic it.
It’s so encouraging to hear about the weight gain and I’m glad that the nutritionist was advocating FOR you guys – the fact that Paul is improving with treatment is awesome. I’ve found a lot of times in my experience, doctors make a diagnosis mostly on what treatment works and not so much on what numbers say. I pray that this is the answer for Paul and your whole family.
June 11th, 2010 at 7:30 pm
oh gee. I hope you receive crystal clear information soon!
June 11th, 2010 at 8:57 pm
I am so glad he gained weight! Praying for a clear answer.
June 11th, 2010 at 10:17 pm
Is the déjà-vu for you guys? Didn’t Bill go through something similar a LONG time ago? (A diagnosis of Celiac Disease and then he didn’t have it). Hopefully you will get the definative results.
June 11th, 2010 at 11:52 pm
Oh good grief! That Dr. should have told you it was iffy in the first place. What a roller coaster! I would definitely be retesting too. How horrible if you could have neen living this lifestyle and it was unnecessary!
June 12th, 2010 at 5:28 am
How about a second opinion from another pediatric GI specialist? Maybe they could help with the decision making process.
June 12th, 2010 at 6:25 am
Praying that you get a definitive answer.
June 12th, 2010 at 7:57 am
don’t know what insurance you have but blue cross/shield has a service (free) that helps with these kinds of issues. we have used them for adam and his spine problems. check with your insurance co and see if they anything like this. it is kind of like a second/third opinion without Paul having to be tested again
June 12th, 2010 at 8:04 am
Yes, we did. I lived gluten-free for three years before getting a negative test for celiac.
June 12th, 2010 at 8:50 am
Gosh…how totally confusing for Paul and your girls.
Their little heads are spinning and now yours is too. Keep fighting and you will get your answers.
Prayers as always from me. Just keep taking it one day at a time until you get your answers.
((Big Hugs)) my friend.
June 12th, 2010 at 8:51 am
PS….love the new blog look!
I <3 polka dots
June 15th, 2010 at 9:25 pm
Weelll— good news, bad news? Hoping the answer is very clear for you after the genetic testing!!
June 21st, 2010 at 1:34 pm
I am hoping with all my heart that you will have more definitive answers. I agree with your feelings about not having to do the gluten free diet unless absolutely necessary. I’ll keep Paul in my prayers.
July 14th, 2010 at 10:14 pm
[...] That news was hard to take. We were really hoping for a definite yes or no.. [...]