Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

I Hate My Pediatric Gi...
0

23 posts in this topic

Our appointment today could barely have gone worse. So, at the GI's office, we had a different nurse this time, who I had to correct that we had done naked weights on my son the past 2 visits, rather than clothed on the digital scale. Then when she measured him, he had somehow shrunk. Fine, whatever, different nurses, it's just frustrating because I know he's grown since his 18 month clothes have gotten too short for him.

Then into see a different nurse, whom I gave a monthly update to. An update that I'm pretty sure the GI didn't even look at.

Then he came in, asked me how we were, and if DS was any better, and I explained that we'd had some improvement in stools, but not completely. Then I explained that I'd only recently gone gluten free myself and that DS had probably been getting gluten via my colostrum before that. Then he asked about the dietician, I told him she was happy with our diet, he complained fairly that I hadn't returned the food log they gave me to take home - my bad, I've been busy and pregnant and haven't mailed it back, and then he told me that we should come back in 2 months.

So I asked him about what our next steps were. And it was like he woke up and actually looked at my son's charts enough to criticize that DS had coconut milk when he should have pediasure, and again stated that he wasn't getting enough calories. So I said no, and he was definitely getting enough calories, that some days he got as much as 1500 calories because I had been tracking it before the dietician appointment. And the GI laughed and told me that there was no way he was eating 1500 calories, and when I disagreed, he asked me where it was all going then? Because it would have to be either getting vomited up or pooped out or a problem with his metabolism, and his thyroid levels were fine.

I agreed that he wasn't vomiting it up either, and repeated that I was sure it was getting pooped out. So then he decided that we need to do a malabsorption study on my son NOW...it's been three months, and they've just decided to look at this now?

I am convinced that the GI thinks I'm lying about everything and is only doing this study to prove that my son isn't malabsorbing and I'm just not feeding him enough calories, and that there is nothing else wrong with him. I'm also worried, given that his diapers are making progress, that he won't show "enough" malabsorption by the time we get this test performed. Of course we couldn't have done this study before we went gluten free. Ugh.

And then just to put a cherry on top, he not only circled failure to thrive but weight loss on this visit's diagnostic sheet. Which is bullshit, because my son gained, albeit only a minor amount, going from 22 lbs exactly to 22.5 lbs in a month. Unfortunately, between that visit, we also had a weight from the dietician visit, where they stood him, fully clothed, on a different digital scale. Of course, he weighed a little over 23 lbs at that visit, because he was wearing clothes! But the GI used that weight to diagnose "weight loss", apparently - he didn't even say anything to me, so I didn't notice it until we were checking out.

I am going to start looking for a 2nd opinion tomorrow. Not sure how to phrase it in a way that won't get us rejected. It just seems to me that this doctor has decided that I'm the cause of my son's health issues and isn't willing to look for the real cause - I mean, I'd think the next step would be allergy testing or something like that. I feel so angry and defeated right now.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Sorry to hear that! I even had a Dr. tell me, "She doesn't have food allergies!", in reference to my daughter. What was she? A psychic? She was tested repeatedly for allergies but never for foods until I finally took her in specifically for that. She didn't have any but... She does have multiple food intolerances. And those had included wheat and gluten.

Thankfully we have changed her diet and she is now on a cocktail of vitamins and minerals and *knock wood* hasn't been ill for about a month now. Of course school is out so she is not in contact with as many kids.

0

Share this post


Link to post
Share on other sites

Our appointment today could barely have gone worse. So, at the GI's office, we had a different nurse this time, who I had to correct that we had done naked weights on my son the past 2 visits, rather than clothed on the digital scale. Then when she measured him, he had somehow shrunk. Fine, whatever, different nurses, it's just frustrating because I know he's grown since his 18 month clothes have gotten too short for him.

Then into see a different nurse, whom I gave a monthly update to. An update that I'm pretty sure the GI didn't even look at.

Then he came in, asked me how we were, and if DS was any better, and I explained that we'd had some improvement in stools, but not completely. Then I explained that I'd only recently gone gluten free myself and that DS had probably been getting gluten via my colostrum before that. Then he asked about the dietician, I told him she was happy with our diet, he complained fairly that I hadn't returned the food log they gave me to take home - my bad, I've been busy and pregnant and haven't mailed it back, and then he told me that we should come back in 2 months.

So I asked him about what our next steps were. And it was like he woke up and actually looked at my son's charts enough to criticize that DS had coconut milk when he should have pediasure, and again stated that he wasn't getting enough calories. So I said no, and he was definitely getting enough calories, that some days he got as much as 1500 calories because I had been tracking it before the dietician appointment. And the GI laughed and told me that there was no way he was eating 1500 calories, and when I disagreed, he asked me where it was all going then? Because it would have to be either getting vomited up or pooped out or a problem with his metabolism, and his thyroid levels were fine.

I agreed that he wasn't vomiting it up either, and repeated that I was sure it was getting pooped out. So then he decided that we need to do a malabsorption study on my son NOW...it's been three months, and they've just decided to look at this now?

I am convinced that the GI thinks I'm lying about everything and is only doing this study to prove that my son isn't malabsorbing and I'm just not feeding him enough calories, and that there is nothing else wrong with him. I'm also worried, given that his diapers are making progress, that he won't show "enough" malabsorption by the time we get this test performed. Of course we couldn't have done this study before we went gluten free. Ugh.

And then just to put a cherry on top, he not only circled failure to thrive but weight loss on this visit's diagnostic sheet. Which is bullshit, because my son gained, albeit only a minor amount, going from 22 lbs exactly to 22.5 lbs in a month. Unfortunately, between that visit, we also had a weight from the dietician visit, where they stood him, fully clothed, on a different digital scale. Of course, he weighed a little over 23 lbs at that visit, because he was wearing clothes! But the GI used that weight to diagnose "weight loss", apparently - he didn't even say anything to me, so I didn't notice it until we were checking out.

I am going to start looking for a 2nd opinion tomorrow. Not sure how to phrase it in a way that won't get us rejected. It just seems to me that this doctor has decided that I'm the cause of my son's health issues and isn't willing to look for the real cause - I mean, I'd think the next step would be allergy testing or something like that. I feel so angry and defeated right now.

Sesare....you know my fear about this doc!...be aware, if they involve CPS that will mean trouble for all the kids in the household, including the one that you are carrying.

I would get him seen and measured at your peds office, ASAP! and never set foot in that GIs office again.

0

Share this post


Link to post
Share on other sites

I agree, you need a new pedi GI ASAP. I would start fresh with the new GI and simply state that you are wanting a second opinion, nothing wrong with that!

Allergy testing is something you would need to talk to your ped about getting a refferal for. I suggest a pedi allergist for this AND one whom will test for IgE reactions since those can and typically do cause GI symptoms.

UGIs and even an UGI with SBFT (Upper GI with Small Bowel Follow Thru) would be an excellent place to start. You will be able to see how things move along and it is not an invasive procedure.

I always like the docs that look for the zebras even though they "think" they hear horses coming.

0

Share this post


Link to post
Share on other sites

Just to add insult to injury, I finally received a response back from the University of Chicago Celiac Center, who I had contacted several weeks back regarding a possible 2nd opinion. This was the e-mail they sent me:

Only 1 week off gluten won't mask at all the results of the Prometheus tests. Keep in mind having only a genetic positive test (IF it come back positive) does not mean having celiac.

It is important to realize that the symptoms described (basically, failure to thrive and chronic diarrhea) can be due to a number of conditions other than celiac, and insisting on celiac might end up by delaying the right diagnosis. For instance:

- Immune deficiency syndromes

- Cow's milk protein allergy

- Small bowel bacterial overgrowth

- Giardia infection

- sucrase-isomaltase deficiency

etc.

Please notice that the first 4 of this short list are all conditions associated with increased intraepithelial lymphocytes too!

Now, I am MORE than happy to look at other possible causes, but none have been suggested to us. Additionally, I think we can rule out Giardia and cow's milk protein allergy since they tested him for Giardia at the beginning of our journey, and he has been totally dairy free for weeks now, not to mention that he never had any issues with milk protein when we were nursing. But the GI hasn't even suggested that there could be an issue with his immune system or bacteria in his intestine. Or really, anything else except more calories.

I guess the only positive benefit of all this is that in the unlikely event that he has one of these other issues, his stool test will prove the malabsorption. If he is improving because of being gluten free, well, I will be able to point out weight gain, one would assume - after all, 1/2 a lb in a month where he was still getting glutened by my colostrum is pretty good, and can only get better as he continues to heal. But yes, we will be calling the GI at the other hospital tomorrow, when normal business resumes. I doubt we will look back.

0

Share this post


Link to post
Share on other sites




I would also look at FPIES, Gastroparesis/Delayed Gastric Emptying, or even dysmotility in the intestines in addition to the others. A *good* GI will look at the ENTIRE picture, not just one or two symptoms.

0

Share this post


Link to post
Share on other sites

Just to add insult to injury, I finally received a response back from the University of Chicago Celiac Center, who I had contacted several weeks back regarding a possible 2nd opinion. This was the e-mail they sent me:

Only 1 week off gluten won't mask at all the results of the Prometheus tests. Keep in mind having only a genetic positive test (IF it come back positive) does not mean having celiac.

It is important to realize that the symptoms described (basically, failure to thrive and chronic diarrhea) can be due to a number of conditions other than celiac, and insisting on celiac might end up by delaying the right diagnosis. For instance:

- Immune deficiency syndromes

- Cow's milk protein allergy

- Small bowel bacterial overgrowth

- Giardia infection

- sucrase-isomaltase deficiency

etc.

Please notice that the first 4 of this short list are all conditions associated with increased intraepithelial lymphocytes too!

Now, I am MORE than happy to look at other possible causes, but none have been suggested to us. Additionally, I think we can rule out Giardia and cow's milk protein allergy since they tested him for Giardia at the beginning of our journey, and he has been totally dairy free for weeks now, not to mention that he never had any issues with milk protein when we were nursing. But the GI hasn't even suggested that there could be an issue with his immune system or bacteria in his intestine. Or really, anything else except more calories.

I guess the only positive benefit of all this is that in the unlikely event that he has one of these other issues, his stool test will prove the malabsorption. If he is improving because of being gluten free, well, I will be able to point out weight gain, one would assume - after all, 1/2 a lb in a month where he was still getting glutened by my colostrum is pretty good, and can only get better as he continues to heal. But yes, we will be calling the GI at the other hospital tomorrow, when normal business resumes. I doubt we will look back.

I don't think this email is so bad. I would take it to the new doc. I would keep it in my purse and see if he suggests these things. If not, show it to him so he can see that other experts want all problems considered.

You might want to take pictures so his diaper poops for a few days to prove how much he goes? How much he eats and drinks and how much comes out by how many wet diapers and poopy diapers. ( I think you said he was in diapers? ). Doctors like I & O s ( Intake and Output). Might help to show you do feed him if that becomes an issue.

0

Share this post


Link to post
Share on other sites

I don't think this email is so bad. I would take it to the new doc. I would keep it in my purse and see if he suggests these things. If not, show it to him so he can see that other experts want all problems considered.

You might want to take pictures so his diaper poops for a few days to prove how much he goes? How much he eats and drinks and how much comes out by how many wet diapers and poopy diapers. ( I think you said he was in diapers? ). Doctors like I & O s ( Intake and Output). Might help to show you do feed him if that becomes an issue.

Oh, no, I didn't find the e-mail bad at all, just that it proved to me that this GI isn't really considering other causes at all now, just convinced that I'm underfeeding my son.

My son is 22 months, so potty training is starting, but we will probably be in diapers yet for a while. And I doubt he is able to control his bowels with the loose stools he has. And yes, I am suppose to complete a food diary for their nutrition analysis, but since it's all self-reported, I don't think this doctor will necessarily believe it anyways. I certainly can take pictures of his poop on a given day.

But one of my primary worries is that his poop is getting better, finally. So I'm not sure how much credence it will give to my argument at this point. His poop was the reason I wanted him looked at in the first place, and it just seems like no one has cared about it, apart from making sure it didn't contain parasites or bacterial infection.

0

Share this post


Link to post
Share on other sites

I am wondering why they haven't done allergy testing yet. Our Ped was able to do it without a referral. Basically, I went in and demanded an allergy test. I had no idea that my son had IgE reactions to MULTIPLE foods including wheat.

0

Share this post


Link to post
Share on other sites

What are you thinking it may be an allergy? I am not seeing a list of symptoms (you probably listed those elsewhere) but if it is GI issues, allergy testing isn't going to show anything. IgE allergies is what they test for and that I think you would know he has (itching, breathing issues, vomiting, diarrhea, shock).

I have gotten second (and even third now) opinions. You just call for an appointment and start again. Explain what you have had done and see what the new Dr's recommendation is.

Good luck. Sounds like this Dr is a real piece of work :(

0

Share this post


Link to post
Share on other sites

I am also wondering why we haven't looked at food allergies. The dietician put it in her recommendations if we don't see improvement, and I know that if he's even temporarily developed an allergic response to something else, it could be delaying healing. I actually think that is what I was expecting when I went in, and what prompted me to ask about next steps.

0

Share this post


Link to post
Share on other sites

Stephanie, what do you do about records? I mean, I have copies of most of my son's significant test results, fortunately, but do you explain that your child has been seeing Dr. So and So, or do you request a copy of your child's file, or what?

0

Share this post


Link to post
Share on other sites

I am thinking it isn't allergies is what I am saying. Honestly, if it is an intolerance issue, an allergist isn't going to be of much help. Allergy testing isn't very accurate to begin with so the "alternative" testing for intolerances is even less so.

It sounds as if you have been doing a food log. Have you kept trace of issues as well? When we were figuring out DS1/DD/DS3's issues that was the most helpful. We figured out several foods we needed to avoid because of the detective work and then taking things out of the diet and retrying to see what happened. Again, allergy testing as a fishing expedition isn't recommended at all. There are too many false +'s that lead to very restricted diets for no reason.

As for a second opinion, I tell them we have been to other Dr's. I don't name names (if the new Dr wants copies of medical records they'll find all that out anyway, not that I hid it at all either.) I think that people are worried about being polite with Dr's. The truth is, you are the consumer and part of being a good consumer is getting to the bottom of things and if that requires you to find a Dr who is more knowledgable, so be it! I think any Dr. who is "offended" by a patient wanting a second opinion is pretty much worthless! If they are confident in the dx they have given, what do they care, ya know?

I would take copies of the tests with you. Anything more the new Dr would need, they can get if you sign a release. All this assuming you are in the US (I am not sure how things work elsewhere :) )

Again, keep us posted and good luck. It's so hard when we are trying to do the best for our littles!

0

Share this post


Link to post
Share on other sites

IgE allergies are VERY real, just ask a parent whose child has FPIES. Don't jump to the horse when a zebra may be what you are looking for. Diarrhea CAN and IS a symptom of MANY different GI disorders, so WHY jump to a certain dx instead of looking at the ENTIRE picture? IgE testing is done by blood, NOT the prick testing that you hear often about. We have been down the GI road since my son, whom will be 9 in November, was born. Don't discount things that you think are "off the wall"....

0

Share this post


Link to post
Share on other sites

Crystal, I think you are misunderstanding.

1) IgE allergies are test for via blood and/or skin testing. These are the allergies an ALLERGIST would test for. These are the ones that can/do cause anaphylactic reactions. Maybe you should look into the difference between IgE, IgG, IgA and other immunity. They are very different and testing for any of them is not really accurate.

2) I know about FPIES. My kid has FPIES. I have seen him go into shock because of it.

3) I believe I said I didn't know all her signs and symptoms. I also said if diarrhea is the "only" thing she is dealing with (and I say only but know it's a big issue!), that it is doubtful that IgE allergy testing is going to be of much help. It is NOT recommended to test kids for allergies they have not shown a clear reaction to.

I am in no way suggesting she not see an allergist, I am saying that unless it is an IgE allergy that most board certified allergists are not going to test for anything else as they are intolerances and not true allergies and not something they are really into.

0

Share this post


Link to post
Share on other sites

I would definitely still do an allergy test to rule it out. I took my son in to the doctor just for GI issues (his symptoms were chronic constipation and then he began vomiting each morning for no apparent reason). The doctor said it was just a virus, but I demanded an allergy test and Celiac panel. The celiac panel came back negative, but his allergy test showed he had IgE reactions to 6 of the top 8 food allergens and also other 'outdoor allergens'. He never showed any of the other signs besides GI issues. NOW that we have gone gluten free (and avoided his other allergies) if he accidentally ingests one of his allergens, he gets the rashes, stuffiness, etc., but he never showed those reactions before so we had no idea.

0

Share this post


Link to post
Share on other sites

I'm fine with testing things regardless. If they want to look for other allergies/intolerances, that works for me. If they want to look for other autoimmune issues, or enzyme deficiencies, I'm fine with that.

My biggest problem is just that this GI isn't doing his job. He isn't looking. He's made up his mind (or at least that's how it feels) that this is all in my head and my son is only not gaining weight because of caloric intake. That's why he wants him on pediasure - it's easy to get kids to drink it and then he probably feels he can adequately measure my son's caloric intake. I am just frustrated because I have been saying for months that my son is clearly malabsorbing his food, which is why he eats so much and why he is so thin, and no one has even wanted to look at his stools for malabsorption until now.

I talked to the other pediatric GI's office today, and unfortunately, we have to get a referral for them to see us. Which could potentially be an issue in the short term, because since I was dissatisfied with the way our old pediatrician blew us off and dismissed his failure to gain weight or grow, and dragged her feet about getting him tested, I went and switched practices. However, we can't get in with his new pediatrician for a well visit until August 7th...we had an interview, but that's it, and I'm sure his records have been transferred, so calling our old ped may not be an option, and I'm not sure if they'll be willing to give us a referral to a different GI unless we've been seen, officially, by the new GI. So I have some more calls to make, but no one was picking up when I tried calling the office this morning. So we're sort of in limbo now.

0

Share this post


Link to post
Share on other sites

That is really frustrating. I wonder, however, if your original ped would still be willing to run an allergy blood test (especially now that he knows you are serious). We just went in for a blood draw and they sent it off to the lab (didn't even have to see the ped, he just needed to put the order in) its worth a shot, anyway. I was so mad to find out that for years I was actually 'poisoning my own child with all of those allergens! Just tell him you want to test for all indoor and outdoor allergens.

0

Share this post


Link to post
Share on other sites

Again, for everyone suggesting going to allergy testing, please keep in mind that it is not recommended that you test just to test. Unless you have seen an actual reaction to something it is not suggested to test for it. Reason being that an IgE allergy test is only 50% accurate for a positive result. So even if you get a + test result, 1/2 the time there is no allergy and NO reason to remove that food from the childs diet. Now a negative result is about 90% accurate but as you see, the science is not very exact.

0

Share this post


Link to post
Share on other sites

Again, for everyone suggesting going to allergy testing, please keep in mind that it is not recommended that you test just to test. Unless you have seen an actual reaction to something it is not suggested to test for it. Reason being that an IgE allergy test is only 50% accurate for a positive result. So even if you get a + test result, 1/2 the time there is no allergy and NO reason to remove that food from the childs diet. Now a negative result is about 90% accurate but as you see, the science is not very exact.

I am wondering how the allergy testing is only 50% accurate? Can I ask where you get that information? As I understand it the severity of the reaction is the part that is not very accurate, so even if there are only low levels of IgE towards a particular allergen, the child may have a more severe reaction. Alternatively, even if the IgE levels are high, the child might have weak or no reaction. Also, after getting the allergy test results, you can always do a food challenge thereby checking the reaction to the problematic food.

I guess I just don't see the hesitancy in doing an allergy test. It really hurts nothing (besides the actual blood draw) and yet can tell so much and give you a place to start instead of just grasping at straws to see what the problem might be.

0

Share this post


Link to post
Share on other sites

I am wondering how the allergy testing is only 50% accurate? Can I ask where you get that information? As I understand it the severity of the reaction is the part that is not very accurate, so even if there are only low levels of IgE towards a particular allergen, the child may have a more severe reaction. Alternatively, even if the IgE levels are high, the child might have weak or no reaction. Also, after getting the allergy test results, you can always do a food challenge thereby checking the reaction to the problematic food.

I guess I just don't see the hesitancy in doing an allergy test. It really hurts nothing (besides the actual blood draw) and yet can tell so much and give you a place to start instead of just grasping at straws to see what the problem might be.

I 100% agree with you!!!!!!!!!!!!!! That is my thing, why NOT do something like this and look for the "zebras" instead of looking for a horse?

0

Share this post


Link to post
Share on other sites

I am saying that IgE mediated allergies, which are the ones that an allergist is looking for would have OTHER symptoms above and beyond GI issues. If it is GI issues only, it is usually NOT IgE mediated.

https://www.nationaljewish.org/about/mediacenter/pressreleases/2011/food-challenge/

http://www.ccjm.org/content/78/9/585.full#sec-5

http://allergynotes.blogspot.com/2011/09/food-specific-ige-tests-arent.html

http://www.medicalnewstoday.com/articles/185263.php

There are more as well. I am not saying not to investigate it. What I am saying is that if your kid is eating XYZ with no issues and that kid tests positive to XYZ, what did the test prove? Nothing. A food log is more useful in the diagnosis of things because IF you see a reaction you can say "These are the things that kid ate, what's different? What's the same as last time there was this issue."

The allergy Dr's suggest not blanket testing because of the above stats. There are way too many false + that limit a childs diet for no reason.

0

Share this post


Link to post
Share on other sites

Gotcha, but honestly it can really help. Let's say the kiddo reacts to a certain food that contains multiple ingredients, and let's say the reaction isn't immediate, but maybe an hour or so later in which time he also ate some thing else. Someone might be trying to eliminate the wrong ingredients. Or if multiple allergies are present, it would be hard to pinpoint without full elimination and then reintroduction one at a time. With the allergy test at least you can eliminate the handful that the kiddo reacted to and then introduce each one one at a time to determine a reaction. Way easier IMHO than fishing in the dark!

0

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

  • Forum Statistics

    • Total Topics
      103,418
    • Total Posts
      917,668
  • Topics

  • Posts

    • Italian pasta
      Get some celiac travel cards to print off and keep in your wallet.  Present them to your waiter.   http://www.celiactravel.com/cards/ Tell the airline that you need a gluten free meal, BUT take food with you because odds are the airlines will make a mistake.   As far as the wheat pasta.....some folks say the wheat is different.  I personally think they are kidding themselves.  There is no scientific proof that I have found to support this theory.  (Anyone want to present such data?)  Italy, from what I heard is great for celiacs.  I'll know for sure this summer!  I'll be there!   As usual, we plan on bringing some packable food, but we are good at shopping at grocery stores for food and picnicking when traveling.  I expect foods at grocery stores to be clearly marked as they were in Great Britain since they are part of the EU.  
    • Villous atrophy with negative tTG IgG/IgA, high Gliadin IgA!
      It looks like you have a few options that you need to consider pursuing: 1.  Get back to your doctor and tell him to figure out what's wrong with you.  Take a friend because it helps to have someone listen and take notes who is not the patient.  Get copies of all lab reports and doctor notes always and keep a file on yourself to share with future doctors or to monitor your progress.   2.  Ditch this GI and get a new one (SIBO is real per my celiac savvy GI).  Take a friend with you.   3.  You say you are lactose intolerant.  Experiment by going lactose free for six months -- not just a few days.  This will help to promote healing and help determine if milk (lactose or proteins) are causing villi damage and not gluten. 4.  Recognize that some celiacs test NEGATIVE to antibodies.  Per Dr. A. Fasano and Dr. Murrary, based on their clinincal experience and recent data just published, they estimate that 10 to 20 percent of celiac disease patients test negative to the serology screening test. That means consider yourself a celiac and stop your gluten intake for at least six months.  Normal vitamin and mineral levels do not rule out celiac disease.   5.  Recognize that you can multiple reasons for villi damage.  That's why a second consult with a celiac savvy GI is important.   Good luck!    
    • Continued Symptoms
      Try keeping a food and symptom diary.   She could have allergies or intolerances.  But, again, I am not a doctor!  I am healed from celiac disease, but I still react to certain foods and have allergies.  Those will probably never go away as I have been plagued with them all my life (as my siblings have too).  She could have a milk protein intolerance and not just lactose.  Eliminate all dairy too see if it helps.   Speech really normalizes by the age of 8.  I can not say if your public school will evaluate her.  My home-schooled friends are still monitored by the state and receive state funding.  So, I would assume they would receive all the same benefits.  Try calling.  
    • Weeks in and feeling no better
      Let me tell you that based on what people post on this forum, it takes MUCH longer to heal.  In theory,  it should just take a few week on a gluten diet to promote villi healing.  Your body is constantly regenerating new cells in your gut on a daily basis.    Why the delay?   First,  it takes a long time to really master the gluten free diet.  So, in the beginning, dietary mistakes are often made which can delay the healing time.  Second,  celiac disease is an autoimmune disorder triggered by gluten causing a "flare-up" which can be measured by the level of antibodies in your system.  Antibodies can take weeks, months or years to come down.   Third,  there's the type of damage done to your body to consider (e.g. bone damage, depleted iron levels).  Usually anything neuro takes much longer to heal. Has your doctor checked you for nutritional deficiencies?  If not, ask.  You might be really low on a vitamin or mineral.   You could be low on digestive enzymes (actually they can not be released in a damaged gut).  So even when eating gluten free foods, your body is not digesting and absorbing the necessary nutrients.  You could help the healing process by taking gluten free supplements and enzymes.   But it is best to see what you are actually deficient in.   Most of these deficiencies resolve with time. Finally, my parting words of wisdom (as passed on by many of our members), is patience.  I know.  Hard to be patient when you want to feel well, but it will happen.   Hang in there!  
    • Gluten and panic attacks
      Now if everyone out there who probably has a gluten problem adopted your attitude, they would be having a much better life.  After over 10 years gluten-free myself, who really cares about gluten pizza? I go months without gluten free pizza, which is very good by the way, and I am not an emotional wreck.  Imagine!  Glad you feel better and yes, it was the wheat!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
    • ukuleleerika

      Hello! I am new to this Celiac website... Is there anyone out there with Celiac AND extensive food allergies? My allergies include shellfish, dairy, eggs, cantaloupe, kiwi, mango, nuts, oranges, red dye, and more I can't think of. I went to the allergist about a year ago to see why I wasn't feeling well, and once everything was eliminated, I still didn't feel well. We did more testing to find out I had celiac as well as allergies to cattle as well as rye grass (I live on a farm basically). This was back in January 2016. I recently had my endoscopy with the gastroenterologist a week ago. I have no idea what to do or what to eat... So fish and potatoes for me!
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,549
    • Most Online
      1,763

    Newest Member
    ahp
    Joined