0
JenC

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

Rate this topic

Recommended Posts

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.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites
Ads by Google:


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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

  • Upvote 1

Share this post


Link to post
Share on other sites


Ads by Google:


I wouldl not trust anything that man says.

  • Upvote 1

Share this post


Link to post
Share on other sites

. . . 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.)

Share this post


Link to post
Share on other sites

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. :ph34r:

Share this post


Link to post
Share on other sites

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. :angry: Excellent point, though.

Share this post


Link to post
Share on other sites

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. <_<

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites

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. :blink:

Share this post


Link to post
Share on other sites

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!

Share this post


Link to post
Share on other sites


Ads by Google:


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. :blink:

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!

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   8 Members, 1 Anonymous, 364 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Roxanne Bracknell
    Celiac.com 06/22/2018 - The rise of food allergies means that many people are avoiding gluten in recent times. In fact, the number of Americans who have stopped eating gluten has tripled in eight years between 2009 and 2017.
    Whatever your rationale for avoiding gluten, whether its celiac disease, a sensitivity to the protein, or any other reason, it can be really hard to find suitable places to eat out. When you’re on holiday in a new and unknown environment, this can be near impossible. As awareness of celiac disease grows around the world, however, more and more cities are opening their doors to gluten-free lifestyles, none more so than the 10 locations on the list below.
    Perhaps unsurprisingly, the U.S is a hotbed of gluten-free options, with four cities making the top 10, as well as the Hawaiian island of Maui. Chicago, in particular, is a real haven of gluten-free fare, with 240 coeliac-safe eateries throughout this huge city. The super hip city of Portland also ranks highly on this list, with the capital of counterculture rich in gluten-free cuisine, with San Francisco and Denver also included. Outside of the states, several prominent European capitals also rank very highly on the list, including Prague, the picturesque and historic capital of the Czech Republic, which boasts the best-reviewed restaurants on this list.
    The Irish capital of Dublin, meanwhile, has the most gluten-free establishments, with a huge 330 to choose from, while Amsterdam and Barcelona also feature prominently thanks to their variety of top-notch gluten-free fodder.
    Finally, a special mention must go to Auckland, the sole representative of Australasia in this list, with the largest city in New Zealand rounding out the top 10 thanks to its 180 coeliacsafe eateries.
    The full top ten gluten-free cities are shown in the graphic below:
     

    Jefferson Adams
    Celiac.com 06/21/2018 - Would you buy a house advertised as ‘gluten-free’? Yes, there really is such a house for sale. 
    It seems a Phoenix realtor Mike D’Elena is hoping that his trendy claim will catch the eye of a buyer hungry to avoid gluten, or, at least one with a sense of humor. D’Elena said he crafted the ads as a way to “be funny and to draw attention.” The idea, D’Elena said, is to “make it memorable.” 
    Though D’Elena’s marketing seeks to capitalizes on the gluten-free trend, he knows Celiac disease is a serious health issue for some people. “[W]e’re not here to offend anybody….this is just something we're just trying to do to draw attention and do what's best for our clients," he said. 
    Still, the signs seem to be working. D'elena had fielded six offers within a few days of listing the west Phoenix home.
    "Buying can sometimes be the most stressful thing you do in your entire life so why not have some fun with it," he said. 
    What do you think? Clever? Funny?
    Read more at Arizonafamily.com.

    Advertising Banner-Ads
    Bakery On Main started in the small bakery of a natural foods market on Main Street in Glastonbury, Connecticut. Founder Michael Smulders listened when his customers with Celiac Disease would mention the lack of good tasting, gluten-free options available to them. Upon learning this, he believed that nobody should have to suffer due to any kind of food allergy or dietary need. From then on, his mission became creating delicious and fearlessly unique gluten-free products that were clean and great tasting, while still being safe for his Celiac customers!
    Premium ingredients, bakeshop delicious recipes, and happy customers were our inspiration from the beginning— and are still the cornerstones of Bakery On Main today. We are a fiercely ethical company that believes in integrity and feels that happiness and wholesome, great tasting food should be harmonious. We strive for that in everything we bake in our dedicated gluten-free facility that is GFCO Certified and SQF Level 3 Certified. We use only natural, NON-GMO Project Verified ingredients and all of our products are certified Kosher Parve, dairy and casein free, and we have recently introduced certified Organic items as well! 
    Our passion is to bake the very best products while bringing happiness to our customers, each other, and all those we meet!
    We are available during normal business hours at: 1-888-533-8118 EST.
    To learn more about us at: visit our site.

    Jefferson Adams
    Celiac.com 06/20/2018 - Currently, the only way to manage celiac disease is to eliminate gluten from the diet. That could be set to change as clinical trials begin in Australia for a new vaccine that aims to switch off the immune response to gluten. 
    The trials are set to begin at Australia’s University of the Sunshine Coast Clinical Trials Centre. The vaccine is designed to allow people with celiac disease to consume gluten with no adverse effects. A successful vaccine could be the beginning of the end for the gluten-free diet as the only currently viable treatment for celiac disease. That could be a massive breakthrough for people with celiac disease.
    USC’s Clinical Trials Centre Director Lucas Litewka said trial participants would receive an injection of the vaccine twice a week for seven weeks. The trials will be conducted alongside gastroenterologist Dr. James Daveson, who called the vaccine “a very exciting potential new therapy that has been undergoing clinical trials for several years now.”
    Dr. Daveson said the investigational vaccine might potentially restore gluten tolerance to people with celiac disease.The trial is open to adults between the ages of 18 and 70 who have clinically diagnosed celiac disease, and have followed a strict gluten-free diet for at least 12 months. Anyone interested in participating can go to www.joinourtrials.com.
    Read more at the website for Australia’s University of the Sunshine Coast Clinical Trials Centre.

    Source:
    FoodProcessing.com.au

    Jefferson Adams
    Celiac.com 06/19/2018 - Could baking soda help reduce the inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease? Scientists at the Medical College of Georgia at Augusta University say that a daily dose of baking soda may in fact help reduce inflammation and damage caused by autoimmune diseases like rheumatoid arthritis, and celiac disease.
    Those scientists recently gathered some of the first evidence to show that cheap, over-the-counter antacids can prompt the spleen to promote an anti-inflammatory environment that could be helpful in combating inflammatory disease.
    A type of cell called mesothelial cells line our body cavities, like the digestive tract. They have little fingers, called microvilli, that sense the environment, and warn the organs they cover that there is an invader and an immune response is needed.
    The team’s data shows that when rats or healthy people drink a solution of baking soda, the stomach makes more acid, which causes mesothelial cells on the outside of the spleen to tell the spleen to go easy on the immune response.  "It's most likely a hamburger not a bacterial infection," is basically the message, says Dr. Paul O'Connor, renal physiologist in the MCG Department of Physiology at Augusta University and the study's corresponding author.
    That message, which is transmitted with help from a chemical messenger called acetylcholine, seems to encourage the gut to shift against inflammation, say the scientists.
    In patients who drank water with baking soda for two weeks, immune cells called macrophages, shifted from primarily those that promote inflammation, called M1, to those that reduce it, called M2. "The shift from inflammatory to an anti-inflammatory profile is happening everywhere," O'Connor says. "We saw it in the kidneys, we saw it in the spleen, now we see it in the peripheral blood."
    O'Connor hopes drinking baking soda can one day produce similar results for people with autoimmune disease. "You are not really turning anything off or on, you are just pushing it toward one side by giving an anti-inflammatory stimulus," he says, in this case, away from harmful inflammation. "It's potentially a really safe way to treat inflammatory disease."
    The research was funded by the National Institutes of Health.
    Read more at: Sciencedaily.com