Sorely Disappointed With Gi Appt. Today

[Hailiesmom08]

My daughter had her first GI appointment today. I was hoping and praying we would get answers but instead after the doctor took our $40 Co-pay (which may I add was the biggest waste of $40 EVER) he gives us NO answers but a slip for us to take our daughter in for an X-ray to rule out constipation. ARE YOU KIDDING ME!?!?!

I know when my child is constipated you quack.... is what I wanted to tell this guy.

My daughter has been gluten free for 6 months after us pin pointing the fact that gluten was hurting her. She saw her pedi last week and he told us to give her gluten for two days to run the blood panel. We had to trick our poor little girl into eating a gluten product because offering her a cracker is like offering her poison she would not willingly eat gluten because she knows what it does to her. After 10 mins of eating her gluten filled snack she ran to the bathroom and had diarrhea. She got pale and felt clammy and def did not act like herself.

You mean to tell me this reaction is due to constipation?

Funny thing is.... Once he felt her bloated belly and heard her symptoms he automatically said okay well the next step is to do the biopsy but she will need to eat gluten. We told him straight up NO we will not do that to her. He said ohhh okay well i have had parents tell me this before so before we do the biopsy why don't we rule out constipation first.

I am soooooo irritated with this whole thing already.

My daughter will be home schooled though so we don't have to worry about having medically documented proof for school reasons. With that said I'm almost considering just sticking with her gluten free dairy free diet and just forgetting to get her tested. If her diet works and she is healthy that is all that matters right?!?!

[beebs]

Its up to you if you want to get a diagnosis or not. Some people would say that the immediate reaction that she had from one cracker is enough proof. And because you have already gone gluten free she would need to do a challenge.

PS- gluten for 2 days? That is the wrong advice (which isn't surprising - most Drs don't know anything about celiac), she needs to be eating gluten for months otherwise you run the risk of false negatives....So the challenge would be 3 months eating 4 slices of bread a day.

I am about to challenge my 2 and half year old. But if he seems bad on it I'll take him off it and just go without a diagnosis.

[mushroom]

For a little one you may not need that much gluten -- that is the recommended adult "dose"; however, I realize that even a couple of slices of bread for a wee one may be way too much to be able to inflict for 2-3 months

[beebs]

Its still 3 months though. 2 days would do nothing!

[mushroom]

Its still 3 months though. 2 days would do nothing!

Totally agree.

[Takala]

A possible compromise is she could get genetic testing and see if she's a carrier of the genes predisposing. Just another piece of the puzzle. Oh, and can look at the wiki articles on the DQ HLA 2 and genes and see if family ethnic background indicate are more likely to be potential carriers.

[AVR1962]

I feel for your frustration, it is really hard to deal with these situations. I would ask if you really wanted to put your child thru all of this? I have 4 grandchildren ages 5-11 that are all gluten-free due to the issues that they were having, all doing well off glutens. None of them had the scopes, none of them tested for celiac or gluten intolerance. They just know they cannot eat wheat.

[Hailiesmom08]

Takala thank you I hadn't even heard to try the genetic testing I will look into that!

I have finally came out of denial and realized I have a gluten problem as well. I think I was so focused on getting my daughter better I didnt even realize what was going on with my body. I will aslo look on wiki for those articles thank you!

Any advice from a fellow sufferer is grately appreciated! I use to be one to think all doctors know what they are talking about and allow thrm to milk me for every penny but now that I have that wonderful mothers instinct I know its stronger than some doc's opinion that doesnt wven know us nor would even listen to us.

Avr1962 thanks! Im thinking the route your grandkids have taken is the route we will go. I cant pit her through the gluten challenge. Breaks my heart that the doc even made us do two days of gluten for what I read NO REASON!

[sariesue]

Have you had her tested for food allergies? An immediate reaction like you mentioned is stereotypical to food allergies and wheat is one of the top 8 food allergens. It might be worth considering especially since the blood tests don't require eating the food.

[StephanieL]

If your DD is off gluten, what exactly were you expecting the Dr to do? There aren't any tests (except the genetics which isn't exceedingly helpful) that can be done wile gluten-free.

I also agree that 1) 2 days on gluten isn't going to give you reliable results and 2) I would suspect food allergies with that quick a response (which would be good as those can and often are outgrown!)

[Hailiesmom08]

We haven't had her tested for food allergies yet. Her doctor said as long as we can pin point what is bother her then to just keep her on that diet and as long as she is healthy no need to put her through any more trama. (she had cronic ear infections and tubes put in at 11 months and has bottled acid reflux and aspirating so she has been through a lot for a little girl)

Stephanie- I wasn't sure what the doctor would do or what to expect at all..this obviously is pretty new to us and we are learning though

[StephanieL]

We haven't had her tested for food allergies yet. Her doctor said as long as we can pin point what is bother her then to just keep her on that diet and as long as she is healthy no need to put her through any more trama. (she had cronic ear infections and tubes put in at 11 months and has bottled acid reflux and aspirating so she has been through a lot for a little girl)

Stephanie- I wasn't sure what the doctor would do or what to expect at all..this obviously is pretty new to us and we are learning though

I have said many times before, people don't tell you about this stuff when they talk about how wonderful parenting is! It isn't all hugs, kisses and sunshine When dealing with medical issues, it is just heartbreaking at times! Hugs to you both.

There are 2 ways to allergy test. One is a blood test and one is skin price (there are 2 other types but these are the most common). While the result aren't 100% (a positive is about 50/50 on accuracy and a negative is about 90+% accurate) they can give yo some information without being too invasive. It may be something to consider. I have found food and symptom logs to be helpful.

[M0Mto3]

So sorry to hear that you didn't get any answers from the doc. I know I shared this with you before, but I did put my little one through the gluten challenge and the only good that came out of it was that the dr's saw how awful she did on it and they believe that she can't tolerate gluten (or at least wheat).

I think that you have to just trust your instincts. It doesn't really matter if the dr's agree or not. You don't need the medical diagnosis at this point in her life. All you need to know is that she is healthy off of gluten.

Although, it may be worth it to do allergy testing, just to rule that out. I do agree, though, that 10 minutes is a really fast reaction to food. The food wouldn't have even made it to the small intestine, yet. It takes time for food to get from the stomach into the small intestine. Celiac's is a problem in the small intestine, so I can't imagine it would cause any symptoms that quickly.

I glutened my daughter yesterday morning (stupid carnation instant breakfast) and she started with diarrhea about 8 hours later. She had it all day today, too

[Hailiesmom08]

Stephanie you are so right. No one could have prepared me for what we have gone through with our daughter...no one told me it would be sooo heartbreaking.

Thank you for the knowledge! I will def talk to her doctor again about allergy testing again. Not having any answers is bothering me. Her stomach is soooo bloated, she has yeast on her scalp, nasty/stinky/sticky poo's. I want answers!

[Hailiesmom08]

M0Mto3

So sorry to hear your daughter was glutened today

Before we put my daughter on a gluten-free diet she did not poop right away after eating gluten...in fact say we had pizza one night she wouldn't have a nasty poop until the next morning.

When we got her on the gluten-free diet she started having healthy normal poos every day or two.

Every once in awhile a nasty one would appear again. But not everytime..

One week prior to giving her gluten for the two days to do her blood work (yes I now know this was unesissary)we ate gluten-free fish tacos fried in grapeseed oil. This messed her system up badly. She still wasn't fully recovered from this when we gave her gluten. So im not sure if the pooping within ten min was still from the grapeseed oil or not... Her next poo after eating gluten, again liquid.

I can't wait for her poor little gut to heal right now it's just a mess.

If one did eat gluten... after the days/days of diarrhea is it normal to then be a little constipated for a few days?

Thanks!

[beebs]

Some people absolutely have constipation from gluten!

[mushroom]

And some people absolutely alternate between diarrhea and constipation. Frustrating, eh?

[Hailiesmom08]

Very frustrating! If my daughter and I are glutened it's diarrhea for a few days then constipation. Awesome :/

[frieze]

remember that constipation is more than not having a bowel movement. If you have diarhea for three days, the problem goes away, why would you expect to have a bowel movement the next day? It takes time to travel from the stomache to the anus....A day or more if the intestines are working properly.

[Hailiesmom08]

Frieze- I get that but it has been 5 days now since my daughters last BM.

I would think after a bout of diarrhea it would take about 3 days for sytem to get back on track...

[M0Mto3]

My second son (non-celiac) struggled with constipation since I weaned him from breastmilk at 1 year. I finally (after being on tons of meds) took him off the meds and put him on just a probiotic. He has gone basically every day since (over a year ago). Maybe a probiotic will restore the normal flora to her poor little gut to help get her back on track. Maybe I should do this with my little one who is on day 3 of loose horrible bms (not diarrhea anymore, thankfully).

[Hailiesmom08]

M0mto3 thanks so much for the advice!

We had our daughter on syntol a probiotic when we put her on the fluten free diet 6 months ago to help heal her gut. Months later when we saw massive improvements we stopped the probiotic. Now that she has been glutened I think it's time to get her back on the syntol.

Hope your little one starts feeling better soon!

[salexander421]

Hailiesmom08

I have two girls who I suspect have celiac but we have no official diagnosis. By the time celiac was suggested to us they both had already been gluten free. We took our oldest to a GI first, despite being gluten free, because we didn't know what to do either. She was what we thought to be constipated before going gluten free (wouldn't go for 5+ days despite trying to go constantly) but when we would give her a suppository (only thing that would help her go) her poop was very mushy and filled with mucous...not hard like what you would expect with constipation. She also would refuse to try and go on the potty (she was 2 1/2 at the time). After going gluten free she started pooping on her own within days and started going on the potty very soon after that. When we took her to the GI they ran the celiac test but knew she was gluten free, they just wanted to see if by any chance she was producing antibodies. When that came back negative they weren't surprised and we decided to do a genetic test to see if she even carried the genes. She came back DQ8 and DQ6 positive (DQ8 being one of the main celiac genes and DQ6 being a gluten intolerant gene). We decided to do a gluten challenge with her. The GI said to give her 3 servings a day for 3 months. At this time our then 1 year old was also gluten free and we did not intend to challenge her then but she would keep sneaking her sister's food so we ended up challenging her as well. The 3 months was a nightmare but we stuck with it. At the time I figured I had already done the damage so we may as well stick it out so we could test. I didn't know as much then as I know now. Our oldest ended up testing negative and they didn't want to test our youngest since we didn't have any family history of celiac and her sister tested negative. So the only thing we got out of the gluten challenge was that it proved to us that they needed to be gluten free.

Fast forward 7 months and our youngest is still having tummy issues. We finally called and made an appt to see the GI again and in the meantime we decided to make our house 100% gluten free. Within days her tummy aches and diarrhea were gone and she was sleeping better. The GI did a genetic test on her too and she has the same genetics as her sister.

After going through all this I would not recommend a gluten challenge to anyone. They were both doing so good before the gluten challenge and it has taken us 7 or 8 months to get back to that. Also, they are more sensitive after doing the gluten challenge. Before we were able to eat gluten free products like bread, crackers, etc. Now we have to stay away from most prepackage gluten free foods because they are so sensitive to cross contamination. We now avoid all grains.

I am also gluten intolerant/possible celiac. I have double DQ8 which puts me in a high risk category for celiac, LabCorp says I have a 1 in 12 chance based on my genetics. I have always struggled with constipation. Genetic testing is not diagnostic in and of itself but in our case it has been very helpful.

I'm so sorry you are having to go through this frustrating process. Gluten intolerance is so complex and they just don't know enough about it. But that is hopefully changing. My hope is by the time my girls are old enough to make these choices on their own maybe there will be better testing options. There's already some research going on that is experimenting with doing a gluten challenge in a petri dish (they take a biopsy from the small intestines and introduce it to gluten in a petri dish and look for certain markers)so hopefully this will provide more answers in the future. I think for now the best thing you can do is ask questions here and read up on everything you can so you have the information you need to make these decisions. Some docotors just don't know enough about it so you have to educate yourself.

Hope I have been helpful!

[Cathey]

I'm sorry your young one is suffering, I know it's hard to sit back and depend on the professionals who have no clue.

I would have food allergy testing done through blood work and scratch testing. Also watch the lactose and dairy intake, that immediate diarrhea may have been from dairy the day before. Not an easy task watching your young one suffer. Take your gut feeling keep her off the gluten.

[Hailiesmom08]

Salexander421- Goodness I'm so sorry you guys had to go through all that only to get a negative result. That is such a fear of ours, we saw what 2 days did to her which brought back negative results due to her IGA deficiency I just couldn't imagine going two or three months on gluten. After day 6 of my daughter still not having a BM we gave her miralax and when she finally did go poo it looked like sand was in her poop.

I too am hoping thay a few years from now there is another form of testing for celiacs disease.

Thank you for sharing your story and for the advice. I think it's safe to say that for now she will go undiagnosed and remain on a gluten free dairy free diet.

Cathy- I think I will be making an appt. To get the allergy testing. Right now we are still trying to get her healthy again after her being glutened two weeks ago. She has been dairy free since she was 4 months old however we did give her gluten free bread with real butter on it for the blood tests too (we didn't tell her prior to giving her toast or she wouldn't have eaten it so we told her after) she took one bite and as soon and she swollowed it she started crying saying it hurts and pointed to her throat. Minutes later she wasn't talking and couldn't even swallow her saliva so she would run to the sink every 10 min to spit it out. Her doc had told us to try dairy every 6 months with her to see if she could tolerate it. We tried when she was 1 1/2 and it hurt her stomach so bad but she never had any type of throat/tongue reaction that she got thi s last time. But then again she was only 1 1/2 ....

We haven't tried dairy since then until now.