Not Celiac After All - Maybe Hope For Some Of You?

[VydorScope]

Well wrapping up a WHEAT challenge with our three and a half year old after about two years of being gluten-free. Let me tell you it was HARD to give him his first intentional wheat product. I knew deep inside me it was the right thing to do but still....

Looking back and pulling it all together

[JennyC]

Wow. I'm glad you are finding answers for your son. I've never heard of an oat allergy before. A small part of me wonders if my son is really has celiac disease because he did not have a biopsy. He too had all the symptoms, but he had positive blood work (tTG) and a great response to the gluten-free diet. Did your son have his tTG or EMA checked initially? Based on what I understand, EMA and tTG are pretty specific for celiac disease. It is probably parental doubt/hopefulness working on my part. It may be a good idea to have your son's blood drawn for allergy testing. They can test for tons of allergies and then you know for sure and you won't have to worry about various challenge diets. When my son had his blood drawn they ran the celiac panel, food allergies, common environmental allergies, and season allergy tests all at once. I think that I will check to see if he was tested for an oat allergy.

Thank you for sharing your experience

[VydorScope]

Was tTg the ONLY blood test? I believe IgA is considered to be the best indicator. Sorry I am not up enough on the full blood panel to give you much help on a specific interpretation.

[VegasCeliacBuckeye]

Congrats on finding the right diagnosis...

Although this doesn't really explain his reaction to McDonald's fries now does it?

LOL

[VydorScope]

Congrats on finding the right diagnosis...

Although this doesn't really explain his reaction to McDonald's fries now does it?

LOL

LOL

Yea the bad part is some advice I gave out based on his reactions is now suspect

[angel-jd1]

That is exciting that you have found your answers!! Congrats!

-Jessica

[Nancym]

Well, I hope you're right. But one thing to consider is, if there is a small amount of damage it could take a long time to build up to noticable levels again. That's why I'm always a wee bit skeptical of claims that people are cured of their celiac or gluten sensitivity. They might feel much, much better but what if it is just a small amount of damage happening that builds up over the years?

[VydorScope]

Well, I hope you're right. But one thing to consider is, if there is a small amount of damage it could take a long time to build up to noticable levels again. That's why I'm always a wee bit skeptical of claims that people are cured of their celiac or gluten sensitivity. They might feel much, much better but what if it is just a small amount of damage happening that builds up over the years?

I never claimed he is cured. I want to be clear of that. There is currently no cure.

I am stating that he never had it to begin with. It was oats all all along. If he had a clear positive on the biopsy and clear positive on the blood tests we would have never challenged it. But as my post says, he did not.

[VegasCeliacBuckeye]

On a side note,

I was never a fan of oats or oatmeal growing up.

Now that I can't have it, I yearn for apples and Cinnamon oatmeal like no other....damn this disorder!

Vyder, I am seriously happy that you guys got a diagnosis. It must feel like a ton of bricks was lifted off your proverbial shoulder.

[happygirl]

Now that I can't have it, I yearn for apples and Cinnamon oatmeal like no other....damn this disorder!

isn't that the truth!

[Belinda Meeker]

Hi everyone,

New to all this....

and am a bit computer alid. lol

so if any have clues to wht I do I'm sure in for some help!

We have a Celiac Spru 17 year old son and others with symptoms...

So would like to share our storries just need to know where and how.

Let me know thnx Bea

[jerseyangel]

Hi everyone,

New to all this....

and am a bit computer alid. lol

so if any have clues to wht I do I'm sure in for some help!

We have a Celiac Spru 17 year old son and others with symptoms...

So would like to share our storries just need to know where and how.

Let me know thnx Bea

Hi again, Bea

Good job on the post! I suggest you start a new topic with your story and any question you have because more people will see it and you'll get more responses.

Just hit "new topic"--if you're not sure which forum to post in, don't worry, a moderator will place it in the correct one.

[Belinda Meeker]

Thnx again for coming to my rescue Patti,

this is so confusing ....hope I get use to it real quick,

I think I will enjoy being able to tell wht we have been threw,and wht others have to

PS: hubby loves Lemon M pie could I plz have resp.?

[jerseyangel]

Thnx again for coming to my rescue Patti,

this is so confusing ....hope I get use to it real quick,

I think I will enjoy being able to tell wht we have been threw,and wht others have to

PS: hubby loves Lemon M pie could I plz have resp.?

Sure, I'll PM it to you--either later today or tomorrow. It's really good

[elye]

Vincent, it's terrific you have a big, definite answer to your little guy's past troubles. I'm just hoping that Timothy being cleared of all problems with gluten doesn't make you not want to hang around us gluten intolerants anymore!

[debmidge]

Sure, I'll PM it to you--either later today or tomorrow. It's really good

me too, me too want receipe

vincent: glad you got some concrete proof now.

Deb

[jerseyangel]

me too, me too want receipe

It's on the way

[VydorScope]

Although this doesn't really explain his reaction to McDonald's fries now does it?

My best guess is his poor beat to heck tummy just could not handle all that grease. He had not had McD's since going gluten-free (pretty sure that is right) because others had told me of them containing gluten (on this site) long before McD's changed their web site to state they were not gluten-free. Fell in to the trap of blaming everything on gluten thats too easy to do.

[GeoffCJ]

My best guess is his poor beat to heck tummy just could not handle all that grease. He had not had McD's since going gluten-free (pretty sure that is right) because others had told me of them containing gluten (on this site) long before McD's changed their web site to state they were not gluten-free. Fell in to the trap of blaming everything on gluten thats too easy to do.

Not to be a downer, but haven't people on here reported that while they react to small amounts, big amounts of gluten don't affect them much. I'd just be worried that he might be asymptomatic. Will you do any follow up testing (enterolab, endoscopy, or blood work?)

Geoff

[lonewolf]

Hi Vincent,

I'm glad that Timothy is feeling well and that the wheat hasn't made him sick. I hope it's only the oats. Please be careful though. I'm not saying that I want him to be Celiac or gluten intolerant, but based on my experience I know that people make mistakes, thinking that they're okay when they're just asymptomatic.

I was totally wheat-free, very gluten-light for about 7 years and started eating spelt again, apparently with no problems. Maybe it was a coincidence, but I also developed a kidney disease a few months after starting the spelt. Went totally gluten-free and the kidney disease went into remission, so I know they are related. But I didn't have GI symptoms, so I thought I was fine.

I really do wish you the best of luck and hope that all works out for the best.

[VydorScope]

Not to be a downer, but haven't people on here reported that while they react to small amounts, big amounts of gluten don't affect them much. I'd just be worried that he might be asymptomatic. Will you do any follow up testing (enterolab, endoscopy, or blood work?)

Geoff

Considered entorlab, but they ONLY test IgA, and at the height of his sickness his IgA test was about as negative as you can get. So no real reason to think it would be any different now. The most objective test will come in a month or two my new insurance is in place and we can do IgG testing. Since we plan to keep him oat free, the IgG should be negative for gluten unless we some how are missing something.

I know you are all concerned that I am wrong, and I appreciate that. I really do, but look back over his test results that I mentioned. He did not have any typical celiac disease test responses, and everything is consistent with a non-celiac disease oat intolerance. As in regards to "reacting to small amounts", he has gotten small amounts in the past and not reacted.

As for asymptomatic... why would that be different this time? He was VIOLENTLY symptomatic the first time. Spit up blood, writhing in pain, explosive d seven or more times a day, scratching at throat, and so on. Trust me, we would notice that.

He has caught my cold, so will not be doing a malt challenge just yet... so far only wheat been challenged, and tonight I brought home a store "mini cake" which I could only eat a sliver of (41 carbs per serving! ACK!)

[ArtGirl]

I know you are all concerned that I am wrong,....

Not everyone is concerned. Having read your posts for several months now, I am confident that you and your wife are going to monitor him closely and wouldn't do anything that you felt would jeapodize your son's health. From what you have posted, it appears you're on the right track. And, oats will be so much easier to avoid than gluten.

I'm glad to hear that your son's health has improved so much now. I bet is was scarry there in the beginning when he was so very sick.

[VydorScope]

I will also add we are still watching just in case there is an extremely (for him) atypical very long delayed response. Remember all his responses previously were less then 4 hours, not measured weeks like it would have to be now.

History is a great teacher, and his history says wheat was not the problem. but you do have to temper history with present circumstances, and we are doing that.

Some reading I have done suggests a cross reaction with barley, so we will have to carefully challenge that to.

[JennyC]

Considered entorlab, but they ONLY test IgA, and at the height of his sickness his IgA test was about as negative as you can get. So no real reason to think it would be any different now. The most objective test will come in a month or two my new insurance is in place and we can do IgG testing. Since we plan to keep him oat free, the IgG should be negative for gluten unless we some how are missing something.

I know you are all concerned that I am wrong, and I appreciate that. I really do, but look back over his test results that I mentioned. He did not have any typical celiac disease test responses, and everything is consistent with a non-celiac disease oat intolerance. As in regards to "reacting to small amounts", he has gotten small amounts in the past and not reacted.

If I were you, I would get the full allergy and celiac panel run on him after he has been on gluten for a while. I don't think that anyone is trying to second guess the parenting decisions you have made regarding you son, but as you know celiac disease is a tricky and complicated disease. As I mentioned before once you get the allergy tests done, you will not have to second guess about additional allergies and while you are at it you might as well do the celiac panel to confirm that he is not having an internal reaction. (EMA and tTG are the best indicators of celiac disease.) You would not be doing this out of self doubt, but instead to be absolutely sure that your son is as healthy as can be.

Best of luck.

[VydorScope]

If I were you, I would get the full allergy and celiac panel run on him after he has been on gluten for a while. I don't think that anyone is trying to second guess the parenting decisions you have made regarding you son, but as you know celiac disease is a tricky and complicated disease. As I mentioned before once you get the allergy tests done, you will not have to second guess about additional allergies and while you are at it you might as well do the celiac panel to confirm that he is not having an internal reaction. (EMA and tTG are the best indicators of celiac disease.) You would not be doing this out of self doubt, but instead to be absolutely sure that your son is as healthy as can be.

Best of luck.

I have in front of me his test results form when he was at the height of his sickness...

GLIADIN IGG ABS 53.9 (<25 normal)

GLIADIN IGA ABS 12.0 (<25 Normal)

IGA QUANTITATIVE BLO 65 (12-139 Normal)

TTG 0.1 (<7.0 normal)

So as you can see, only the IGG was positive and that is the least accurate/specific of all the tests. I see now I remebered a couple of the numbers wrong (swapped TTG with IGA in my memory) but really does not change the picture. Still pretty much rules out the Entorlab stool test (IGA only) as useful).

As I stated a few times now, we plan to bring him for the IGG Allergy blood test after my insurance is in place, 30 to 60 days from now. Testing TTG or IGA would tell us nothing since at the height of his illness (before we knew about celiac disease and gluten-free) those scores were normal. The indicator in his case will be IGG. If on an oat fee (but not wheat free) diet his IGG is normal, then we know that his lack of symptoms is in perfect sync with reality.

Timothy still has NO REACTION to wheat at all. Last night he had chocolate cake for the first time. He said "WOW Timmy likes it!" hehe. One big sign that he is NOT having trouble is he is sleeping through the night with out issue. Used to be he would wake up writhing in pain. I know cause I got to hold him most of the night in total fear of the unknown at that time. PRAISE THE LORD that is behind us!

I am confident of my testing methodology, and the follow up plans I have. If he DOES have a wheat problem it will show its self, and I will go with what the test show. Right now I see no reason to suspect wheat problems other then a natural fear of being wrong.