Referred To Allergist Before Celiac Testing

[KenzMom]

I have posted on here before about my daughter (17 months old) and her symptoms. 

-Reflux

-Vomiting and stomach pain if dairy is consumed (dairy has been removed from diet)

-Gas and major bloating all the time but especially after meals

-LARGE appetite for food and water (this may not be a symptom...but i thought i would mention it)

-Tends to run a low grade fever with symptomless fever spikes 

-Diarrhea and Constipation (usually 1-2 BM/day but some days its runny and some days it's hard) 

-Microscopic blood found in stool

-Bacterial imbalance found in stool sample (I don't know enough to elaborate- but i know there was a higher than normal presence of a staph bacteria found in the intestines)

 

-The GI mentioned it looked like she had eczema on her cheeks, arms and legs. Her cheeks are usually red with little bumps too. It doesn't bother her. 

 

He said step one was to test her for food allergies-- then remove any foods that she may be allergic to and see how she does. Whether or not she is allergic to anything, he will likely do upper/lower endoscopy. I feel like I am pushing for celiac testing to be done and I am being told that it is not common in children her age (17 months). I understand that the doctor wants to do the allergy testing first (does it seem like her symptoms coincide with a food allergy?) and I don't disagree with that-- but since autoimmune diseases are prevalent in my side of the family, I feel like I won't have much peace until she is tested for celiac....I'm hoping someone has a similar experience with a firm diagnosis of some sort. The waiting game is the hardest part!

 

[ravenwoodglass]

Can you get your ped to at least order a celiac panel for you? That can be ordered by any doctor it doesn't have to be a GI. 

I had allergy testing done before I was diagnosed and it was pretty useless except to show my immune system was in hyperdrive (doctor's actual term). I showed reactions to 98 out of 99 things tested for with a skin prick test. All but 3 of those 'allergies' resolved after a time gluten free. 

You might also consider getting a second opinion from another GI doctor as this one seems kind of clueless about celiac. Celiac was thought to be a childhood disease for years so his idea that someone her age is unlikely to have it is ridiculous. 

[KenzMom]

They tried to draw blood at the ped office for the celiac panel but were unsuccessful (chubby arms and little veins). But I read your post to my husband just now and he agrees with you. He got on the phone with the GI and told them he wanted her tested (endoscopy and blood) before she went for allergy testing. I know that celiacs have food sensitivities and it's my fear that she will test positive for some food allergies and then we remove those foods and wait 2 MORE months to see if the symptoms go away. It would seem much more productive to test for celiac and if she does not have it, then test for food allergies. If for some reason they won't test her, we will definitely be looking for another GI. 

 

Did you have any obvious reactions to foods that you tested allergic to? I can't pinpoint any one thing that she eats that seems to make things worse. I make sure she has some gluten a few times a day. Are there additional things they could/should look for when doing the endoscopy and bloodwork besides celiac? I feel like i need to take charge and be as informed as possible! 

[nvsmom]

It's not unusual to not be able to pin point a food sensitivity unless she is on a very restricted diet and you slowly add a food back in.  Food sensitivity reactions can start within minutes or within a couple of days, which makes it very hard to figure out the cause of symptoms.  I was an undiagnosed celiac for over 30 years, and I still barely figured out my problem, it was mostly luck while looking into health issues  for my son.  LOL

 

Good luck with the celiac testing.

[KenzMom]

Thank you! We have an endoscopy scheduled for next Thursday! Whew! They are going to do an upper scope through the esophagus as well as a scope of the small intestine. They will do biopsies for celiac and he also mentioned checking for an enzyme to determine if she is lactose intolerant or if she has a secondary lactose intolerance as a result of another issue. 

 

They still want her to see the allergist after the scope---but at least we don't have to wait a few months on the scope. I am not sure if they are going to try to draw blood at the same time, but I'm going to ask. They always have a hard time drawing her blood, so it would be nice if they could do it while they are sedated. I know she needs to continue eating gluten and they are supposed to take 5-6 biopsies, right? Anything else I need to be sure to do or to ask? Thank you for holding my hand through this!! 

[StephanieL]

I would say the milk very well could be an allergy in which case you need Epi Pens.  I would very highly caution you on the actual testing for allergies. It is not recommended to test for things you have not seen an actual reaction to (like milk) because the testing is about 50% on the accuracy scale and you could end up avoiding a lot of food unnecessarily.  Also, skin testing on a kiddo with eczema is a bad idea because their skin is already stimulated and will most likely react even if there isn't an actual IgE allergy.  Being that young, I assume you have her diet pretty controlled so doing a food log wouldn't be that difficult I wouldn't think. Even with testing and a Celiac dx for my DS it took another month or two to figure out other issues that were causing him a problem and we were able to take that info the to Dr. and test and sure enough he was allergic to another thing that we wouldn't have found had it not been for food logging!

 

 

I would also ask that they do any blood draws while she's already out!  

[ravenwoodglass]

Glad they are able to get the endo over with for you. I hope the prep for the colonoscopy isn't too difficult for you guys. Your doctor works for you. Don't ask for the blood to be drawn while she is out, insist on it.

Hope you get some answers soon. 

[KenzMom]

StephanieL: Wow! Good info to know about allergy testing! I can definitely start a food log and try to steer the allergist to the foods I think cause her an issue. Also good to hear other people say they have personal experience with celiac disease and allergies.

 

I'm curious if anyone else here had a positive celiac dx with microscopic blood in the stool as a symptom? 

 

ravenwoodglass: THANK YOU! I need the confidence boost...sometimes i feel like I am doing the right thing by listening to the doctor and then I leave and think "I really should have handled that differently!" It helps to have a  group of people who I know have been through the same things and are truly wanting to help. 

[greenbeanie]

My daughter was a few years older when she had her endoscopy (just turned four), but the whole process went smoothly. Definitely do insist that they draw blood (and also wait to insert an IV, if necessary) until she's already out. It should be easy to convince them of this, as it's much better for the nurses too. I'm not sure why they don't just automatically do that for all kids, since it's clearly easiest for everyone!

We'd been seeing an allergist since my daughter was an infant, but with no clear results. She was clearly reacting to something in my breastmilk. All of her food allergy tests were negative, though she had positive tests (and also clear reactions) to multiple environmental allergens by the time she was one. She immediately got better when I stopped breastfeeding (at the allergist's and GI's recommendation) and went on the super-hypo-allergenic formula Neocate instead. Then all the problems returned when she began solids. It took another three years before we figured out that the issue was celiac. However, the one thing we did identify early with the allergist was a latex allergy. It had been hidden previously by all her vomiting after breastfeeding, but once we started formula it became really clear that she was reacting to latex bottle nipples. We changed to silicone, and she was fine. That was an unusual situation, but the point is that an allergist may end up being helpful in unexpected ways, even if not in the ways you anticipate. (The good news is that my daughter outgrew the latex allergy within a year of going gluten free. So I do believe celiac was the root cause of her general immune over-reactivity.)

Good luck, and I hope you get to the bottom of things quickly!

[nvsmom]

Thank you! We have an endoscopy scheduled for next Thursday! Whew! They are going to do an upper scope through the esophagus as well as a scope of the small intestine. They will do biopsies for celiac and he also mentioned checking for an enzyme to determine if she is lactose intolerant or if she has a secondary lactose intolerance as a result of another issue. 

 

They still want her to see the allergist after the scope---but at least we don't have to wait a few months on the scope. I am not sure if they are going to try to draw blood at the same time, but I'm going to ask. They always have a hard time drawing her blood, so it would be nice if they could do it while they are sedated. I know she needs to continue eating gluten and they are supposed to take 5-6 biopsies, right? Anything else I need to be sure to do or to ask? Thank you for holding my hand through this!! 

 

Good stuff!   Just make sure they take 6 or more samples - 6 is a good minimum but many doctors only take 4.  And you probably won't know anything from their visual scan, most celiacs' intestines look fine if not a bit inflamed.  Not many celiacs can be diagnosed without the biopsy.

 

Get them to run the full celiac panel because the tests can miss some people.  Get these:

ttG IgA and tTG IgG - the most common test

DGP igA and DGP IgG - these are very good tests for diagnosing early celiac disease or celiac disease in children

EMA IgA - similar to the tTG IgA but detects more advanced disease

total serum IgA (control test)

AGA IgA and AGA IgG - these are older tests which the DGP tests replaced

 

Good luck!  

[StephanieL]

Microscopic blood could be a lot of things.  

Hugs. You can do this Mama!!  Hang in there and ask all the questions you need! Many of us have BTDT!

[KenzMom]

So today is the day! Actually my daughter is getting her scope done as we speak... We fought to do this before allergy testing and I also requested that they draw blood while my daughter is under anesthesia because they are never able to hit a vein. Well the GI was quite rude and he disagrees that we do the bloodwork at the same time because he says if the biopsies are negative then there is no need for bloodwork (but he's doing the bloodwork anyways). Correct me if I'm wrong, but isn't celiac difficult to determine in young children? And bloodwork plus biopsies would be the smart way to go?? This doctor has already irritated me in many ways. He told me once already that young children don't usually get celiac. I'm tempted to take the results after today and take my business to another doctor.

[Gemini]

Isn't it amazing that GI doctors, who are supposed to know all about the GI tract and different diseases of the GI tract, still think, in 2015, that younger kids usually don't get Celiac?      You know why they think that?  Because they never look for it!  You can't find what you don't look for.

 

I'm with you......take the results of all testing and look for another doctor.

[Brit1612]

Hope you get some answers soon!  We have been looking for answers for my little guy since he was 15 months, he is now 28 months and we are still at a "maybe celiac" diagnosis.  I can't believe your GI tried to tell you young children can't be celiac?!  I agree that you should get a second opinion.....We just got done with our second opinion and second endoscopy.  I think the problem is that it can be challenging to diagnose the little ones (not that they don't have it!)

[KenzMom]

Hope you get some answers soon! We have been looking for answers for my little guy since he was 15 months, he is now 28 months and we are still at a "maybe celiac" diagnosis. I can't believe your GI tried to tell you young children can't be celiac?! I agree that you should get a second opinion.....We just got done with our second opinion and second endoscopy. I think the problem is that it can be challenging to diagnose the little ones (not that they don't have it!)

Gemini- thank you for confirming what my gut is telling me to do!

Brit1612- gosh I would hate to go through a second endoscopy! Was it the biopsies that were yielding a "maybe" result or the bloodwork? Did you try gluten free with your son?

The GI was pretty sure he was going to see inflammation or something indicative of an allergy--but he did not-- so now celiac is looking like more of a possibility to him. Regardless, I will start looking for another doc. I would just hate to continue searching for answers as long as you have :-( your poor baby!

[Brit1612]

Gemini- thank you for confirming what my gut is telling me to do!

Brit1612- gosh I would hate to go through a second endoscopy! Was it the biopsies that were yielding a "maybe" result or the bloodwork? Did you try gluten free with your son?

The GI was pretty sure he was going to see inflammation or something indicative of an allergy--but he did not-- so now celiac is looking like more of a possibility to him. Regardless, I will start looking for another doc. I would just hate to continue searching for answers as long as you have :-( your poor bab

I would have never imagined the long drawn out process this was going to be when we first went to the GI.  Unfortunately this disease is not cut and dry......and I think the younger they are, the even harder it is.  I don't wish celiac on your little one, but I do wish that you get results much easier than we do!!

 

I will try to explain our situation as simply as I can, but it is such a long confusing ordeal!

 

We were originally sent to the GI because we were in and out of the dr with diarrhea and I was concerned that he wasn't gaining weight.  My ped decided to order celiac test (although he knew nothing about it and only ran ttg igg) but I am glad he chose the one random test he did, because he came back positive (weak positive).  So he referred us to a GI.  First GI did not do all the proper testing and went straight to biopsy.  Biopsies came back completely negative and we were told "no celiac", and we were also told "you can choose to go gluten free, or not, if you are still having problems 6 months from now, we will repeat the endoscopy."  

 

They just left us hanging with him still having all the same problems.  So we decided to go gluten free, did that for over 5 months. The poop issues seemed to get a little better and he also grew a little better during that period, but it was not extremely obvious wether it was helping or not.

 

At some point in the middle of being gluten free I set up an appointment for a second opinion with another GI because I felt the first did a horrible job.  She ran some bloodwork (all of it this time) and we were shocked when the one positive test he had originally came back twice as high(while being gluten free)!  But everything else was negative.  He was also IGA deficient which complicated things even further.  So we were told to go back on gluten so we could re-run all bloodwork and repeat the endoscopy (with more biopsies this time).  

 

Gluten challenge lasted almost 3 months, then everything was ran and surprisingly everything (even the positive test from before) came back negative...... no sign of celiac anywhere.  By this time his symptoms had lessened and he seems to be doing fine.  So we trusted this GI that he did not have it and went ahead and continued eating gluten.

 

In the meantime we were waiting to see the immunologist to be able to ask questions about his IGA deficiency.  I was shocked when I was told, "you need to go gluten free, with or without positive test, I believe he is celiac".  This was just last week, so we are officially gluten free again, but just as confused as ever.

 

Sorry for the long response to a simple question, there was just no way of answering it easily!  Good luck to you, I hope you get answers soon!

[KenzMom]

Brit1612- 

 

Thank you for the long reply!! It really is helpful to hear stories and so nice to make "friends" on here. So you are going gluten free for sure-- do you think you will pursue a diagnosis in the future? I think that would drive me nuts....I am a type 1 diabetic and i understand the relationship between celiac and diabetes so I would want to know if my child ACTUALLY had an autoimmune disease so she could be screened appropriately for other issues. 

 

I don't have results yet (I should in a day or 2), but I took my daughter off of gluten immediately following her endoscopy and blood test. HUGE DIFFERENCE!! I've never seen her little belly so flat! She's calm and happy, sleeping through the night and sleeping in! It's only been a few days so I can't tell for sure, but I think the little bumps on her face, arms and legs are going away. Her appetite seems to be curbing (it was out of control). If her results come back completely negative, I'm not sure what to do next...I'm definitely planning on posting her labs on here because I don't fully trust her G.I. 

[Brit1612]

You're welcome!  It is really nice to have people to talk to, especially ones that are going through it with their little ones.  That is great that you are noticing obvious improvements,,,,,that is what we were hoping for, but honestly didn't get, even after 5 months.  The biggest change was an increase in height growth, but that takes a while to notice, and you can't help but ask yourself "was it just a coincidence?"

 

It is driving me nuts!!!  It is so hard to just not know.  And to know which dr to trust, especially when they don't agree on the diagnosis! I think we have only really decided to go gluten free for now, or for a while I should say.  It will just be another piece to the puzzle, if his growth increases again, we will likely have our answer.  I would love to get some kind of concrete answers but I am starting to believe that it may never happen.  Will be curious how your little ones results come out.  

 

How has your daughter's growth been throughout??  That was what really had us concerned more than anything for a while....

[Brit1612]

Oh ya.....my son also had a HUGE diet back when he was having his worst symptoms.  The daycare would comment on how he ate like 10 nuggets at a time(this was when he was like 15 months old)!  I was starting to get frustrated that they were feeding him so much but at the same time, he wasn't growing very well!

[KenzMom]

Gosh yes, I've done a lot of questioning myself and wondering if something is "coincidence" or "all in my head". But I've been putting the pieces of the puzzle together for a while now. 

 

My daughter has always been a chubby baby despite her digestive issues since she 3 months old. The docs would always look at her and think "well she is definitely thriving" becuase she's chubby. She has not stopped growing altogether, but she has dropped from the 75th percentile to the 25 percentile for height in a couple months. She has been tracking along the 25th percentile for 3 months now. I am very tall (with a very tall family) and my husband is about average. I've asked the doctors about the significant change in growth patterns, but again because she still gained weight they weren't concerned. She may turn out to be much more petite than I expected or it might be a gluten thing...If her height shoots back up then I guess I will have my answer. 

[KenzMom]

Oh ya.....my son also had a HUGE diet back when he was having his worst symptoms.  The daycare would comment on how he ate like 10 nuggets at a time(this was when he was like 15 months old)!  I was starting to get frustrated that they were feeding him so much but at the same time, he wasn't growing very well!

Thank you! Someone else who's child broke the bank eating lol. She would throw fits over food---just not normal stuff! I guess it makes sense if kids aren't getting the nutrients they need, then they just keep eating to try to fill the void. 

[Brit1612]

Your story sounds so familiar to ours.....  although my little boy has never been chubby, he has managed to stay a pretty normal weight.  People look at him and say, "he looks healthy, he doesn't look small", but his growth (height wise) plumetted. His whole first year of life he was around the 55% for height.  During the six months where he quit growing he dropped to around 10%.  He managed to gradually get back up to his normal 50% percentile, until these last few months (back on gluten) where he has not grown in height and has now dropped back to around 15%.  The terrible thing is that this last time I didn't even realize it, because he continued to gain weight.  (His first growth issue lasted about 6 months of not gaining weight or growing in height.

 

I agree that I think they try to make up for what they are not getting.  Maybe that is how mine managed to never actually lose weight!