So Flippin' Frustrated! Dd's Gi Was Useless.

[JenC]

So, went to GI today with DD's list of concerns.

crappy sleep (wakes every 20 min-2 hrs all night long)

stomach pain

extremely irregular stool in frequency, consistency, color, smell, sometimes floats a bit

lots of undigested food in stool

gassy

tooth decay to the extent she had four removed

drop in percentiles (from high 90's to BMI being so low it's touching danger zone)

soy and dairy intolerant

says hungry won't eat

bags under eyes

frequent congestion

pain when having BM - shivers, cries, totally freaks

His response: an ultrasound to rule out colon blockage. Give her Benefiber to make her regular. That's it!

He said that she may have IBS like me. That anyone who removes gluten from their diet will have pain when they start eating it again, even someone without celiac or NCGI. All the other symptoms mean nothing to him, just the alternating between C and D.

Her total IGA was 18 (range 20-100). He says it's too high for her to be IGA deficient, therefore her Celiac results are valid (all negative).

I am so, so frustrated. Please help. Does anyone have experience or can point me in direction of research contradicting this doctor? He also said if I am negative for both genes, then he thinks I couldn't possibly have Celiac, and it's pointless to do any more testing with her. What the heck.

[tarnalberry]

Go find a new doc. This one just doesn't want to do his job. After that experience, I wouldn't trust him in general.

[Roda]

That really sucks. Definately find a new one. I was fortunate that the GI I took my oldest son to was very open minded. I disagreed on a few minor points but nothing serious. She was willing to scope my VERY negative child (blood tested 3-4 times prior to visit over the past three years and overwhelmingly negative) based on his stomach complaints and his brother and I having celiac. His biopsy was negative as well, but he has been gluten free since the end of August. His complaints have all went away and he is now gaining weight and starting to grow. Don't give up on finding an answer for both of you. When you have exhaused all the testing you are going to do, try the diet. Sometimes tests can't validate what is going on inside our bodies.

[JenC]

Here are some of the gems I heard from my daughter's GI today. True or False? Links to current research (for my husband) are much appreciated!

ANYONE who removes gluten from their diet and then later reintroduces it will feel ill and react to it. This does not mean they are Celiac or NCGI.

If someone tests negative for the two main Celiac genes, no further testing is needed. Celiac has been ruled out.

IBS is its own valid thing, and not often a misdiagnosis of NCGI.

A Total IGA of 18 (range 20-100) is not enough to be IGA deficient.

Irregularity is most likely cause of foul smelling stools, alternating between regular/C/D, strange colors, undigested food, and lots of gas and stomach cramps.

What do you guys think? Does this doc know his stuff, or should I fire him?

[kareng]

Here are some of the gems I heard from my daughter's GI today. True or False? Links to current research (for my husband) are much appreciated!

If this sounds odd, it because I merged it from another thread. Really it is all one idea.

Carry-on!

[kareng]

My son who was 17 at the time, had an IGA of 18. I consulted an expert and he said it was still high enough that he should test positive if he was. Also, since he didn't have any symptoms we didn't need to pursue it farther. none of his tests were even at the high end of normal. He grew taller than expected, iron, etc were good ( he doesn't eat a lot of iron rich foods or meat).

I have heard that small kids may not make enough antibodies to show up in tests. But I am not positive on that.

[Darn210]

Just from personal experience, I can tell you that I tried a 6 month gluten free trial diet to see if it would help with my joint pain. Absolutely no problems going off gluten and absolutely no problems going back on gluten.

[JenC]

Just from personal experience, I can tell you that I tried a 6 month gluten free trial diet to see if it would help with my joint pain. Absolutely no problems going off gluten and absolutely no problems going back on gluten.

Yeah, that makes sense to me. Why would someone who tolerates gluten fine feel ill after going back on it? Seems like someone who has no issues could eat it or not, with no change in body.

[pricklypear1971]

Did you ask the doc for citations and studies on that one??

The part where everyone has a reaction to gluten...

Honestly, I think the doc's credibility has been blown with you. Find a new one....that you will trust.

[ravenwoodglass]

Here are some of the gems I heard from my daughter's GI today. True or False? Links to current research (for my husband) are much appreciated!

ANYONE who removes gluten from their diet and then later reintroduces it will feel ill and react to it. This does not mean they are Celiac or NCGI.

False. If someone doesn't have an issue with gluten they can stop eating it and start again with no problems.

If someone tests negative for the two main Celiac genes, no further testing is needed. Celiac has been ruled out.

False. While the two main genes are the most common they are not the only celiac associated genes. Case in point. Read my signature.

IBS is its own valid thing, and not often a misdiagnosis of NCGI.

False. If someone has symptoms of IBS there is something going on. The doctor just hasn't figured out what.

A Total IGA of 18 (range 20-100) is not enough to be IGA deficient.

False. The lower range is there for a reason. Even with sufficient IGA false negatives on celiac testing are still possible.

Irregularity is most likely cause of foul smelling stools, alternating between regular/C/D, strange colors, undigested food, and lots of gas and stomach cramps.

If someone is seeing undigested food in their stools there is a problem with digestion. A normal bowel does not act 'irregular'.

What do you guys think? Does this doc know his stuff, or should I fire him?

FIRE HIM

[mushroom]

I wouldl not trust anything that man says.

[Darn210]

. . . or should I fire him?

If you've got another option, I would take it.

I now drive two hours to my daughter's GI (thankfully, we are at a once-a-year check-up stage) because the last GI she had told me on a couple of different occasions that something couldn't have happened . . . like she couldn't react within an hour of accidentally ingesting wheat . . . ummmm, sorry, saw it happen and so did the school nurse and her teacher!! He told me one too many times that I was wrong . . . I was describing symptoms, incidents. I wasn't even saying it was all related. I was just trying to tell him all the abnormal things that were happening (which sounds a little familiar to what you are going through.)

[Takala]

Don't give her benefiber, it has wheat in it.

My, I would interpret that as almost... hostile.

I would suggest filing a complaint with the state medical board. There are also places on the internet along the lines of "rate my doctor," which you can use. There are also research sites where you can check to see if he's had a licensing problem in another state or complaints filed against him. You can also attempt to complain to the insurance companies or HMOs who are reimbursing this fool.

The claim that anyone who re introduces gluten into their diet after abstaining will feel bad is false, there are plenty of normal people who can switch back and forth, including my husband, who eats gluten free at home, sometimes for a week or more, and then will eat it out at a restaurant. This is a medical fact, but I am providing a true life anecdote.

His ignoring the IGA lab report is odd. Why bother to run tests if you're going to ignore them. IGA deficiency can screw up blood tests. Medical fact. Not all the time, I am not IGA deficient, but I'm not "officially" celiac, either, because of bozos like this one.

I guess he thought it was an immaculate conception or a cloning, and your daughter's entire genetic content is only from you. Interesting. I don't suppose he's heard of the concept of gluten intolerance.

No use seeing this "doctor" again for anything.

[JenC]

Don't give her benefiber, it has wheat in it.

Ah, but you are forgetting that this "doctor" doesn't believe we should remove gluten from her diet. Excellent point, though.

[JenC]

Did you ask the doc for citations and studies on that one??

The part where everyone has a reaction to gluten...

Honestly, I think the doc's credibility has been blown with you. Find a new one....that you will trust.

Why didn't I think to ask for citations and studies? Oh well, I'm not going back to him. I knew within a few minutes he was useless. He kept hearing my comments/questions, then turning away from me and speaking only to my husband. Nice.

[pricklypear1971]

Why didn't I think to ask for citations and studies? Oh well, I'm not going back to him. I knew within a few minutes he was useless. He kept hearing my comments/questions, then turning away from me and speaking only to my husband. Nice.

I was making a funny....unfortunately the doc wasn't.

[domesticactivist]

What an ass. Did your husband get the same feeling from him? We had so many doctors address my ex husband instead of me when we were in the hospital, even though I was the one who was clearly tracking, asking questions, etc.

Next time that happens I hope your husband will speak up for you and tell the dr to address you, too.

Definitely get a full copy of your daughter's chart and test results for yourself, then have everything transferred to a new doctor. That guy is both ignorant and a jerk.

[beebs]

I go to a highly recommended GI who is a celiac specialist and has done loads of studies etc. Anyhow - in the beginning he even made us do all that stuff like parachoc and all those stool softeners for the kids, he kept saying " he was almost sure it wasn't gluten related" because of the negative bloods - I think he was just ruling everything out. Now he thinks it probably is gluten (only took 2 years!) Sometimes I think they just cross the t's and dot the i's, having said that I wonder why he seems no to be worried about your child's weight loss. Your childs symptoms sound almost identical to my son's. One thing I have learnt - is if you read heaps and heaps of studies and are able to back your statements up (especially with their own studies) then they take you more seriously! I think we would have been discharged years ago from him if I hadn't kept bring up his studies all the time about false negs etc!

[JenC]

I go to a highly recommended GI who is a celiac specialist and has done loads of studies etc. Anyhow - in the beginning he even made us do all that stuff like parachoc and all those stool softeners for the kids, he kept saying " he was almost sure it wasn't gluten related" because of the negative bloods - I think he was just ruling everything out. Now he thinks it probably is gluten (only took 2 years!) Sometimes I think they just cross the t's and dot the i's, having said that I wonder why he seems no to be worried about your child's weight loss. Your childs symptoms sound almost identical to my son's. One thing I have learnt - is if you read heaps and heaps of studies and are able to back your statements up (especially with their own studies) then they take you more seriously! I think we would have been discharged years ago from him if I hadn't kept bring up his studies all the time about false negs etc!

I can see wanting to rule out everything else before jumping to gluten. I went to him hoping he'd want to cover all the bases. It seems like he isn't concerned enough to think there is even a problem. Great point about bringing respected studies with us next time to reference! I'm concerned that aside from the misinformation he spouted off, he discounted the huge drop in percentiles on the growth charts, the undigested food and sometimes floaty stool, and the fact that I AM gluten intolerant with Hashimoto's. He just completely ignored those things. He didn't even take the stool sample we brought in.

[Coolclimates]

He sounds like a real second rate doc who has no idea what he's talking about. Unfortunately, there are lots of GIs who don't know crap about celiac disease. I saw 2 of them in my town. One said that I had "mild" Celiac Disease and that I "might" benefit from the gluten free diet (since then, I found out I have a severe case). She also said there was no difference in the nutrients between cornstarch vs amaranth. I couldn't believe her ignorance. The other GI who diagnosed me said that it was ok for me to cheat once and awhile when I felt like it! He had told another patient w/ celiac disease that she was "too old and not sick enough" to have celiac disease. Needless to say, he was pretty useless, too. Since then, I have gone up to the University of Chicago Celiac Center to see someone who actually knows what they're doing. It blows my mind that there are so many useless GI doctors out there...but don't give up!

[beebs]

I can see wanting to rule out everything else before jumping to gluten. I went to him hoping he'd want to cover all the bases. It seems like he isn't concerned enough to think there is even a problem. Great point about bringing respected studies with us next time to reference! I'm concerned that aside from the misinformation he spouted off, he discounted the huge drop in percentiles on the growth charts, the undigested food and sometimes floaty stool, and the fact that I AM gluten intolerant with Hashimoto's. He just completely ignored those things. He didn't even take the stool sample we brought in.

Straight away he doesn't sound like he knows anything about celiac and parents with autoimmune diseases and stuff ( I have a few too). Have you a coeliac society where you are? Ring them and ask for the best Paed GI that they can recommend- then get a referral from your Dr. The first Paed we took my eldest too told me he had toddler d and that there was nothing wrong - she was wayyyyy off the mark so we never went back!

[Coolclimates]

It sounds like this doctor also really has a problem with women. What a loser!