Hi Ladies! So I know that this is TERRIBLY annoying - I usually try to start out with a basic understanding of a topic before I start crying out for help, but please bear with me...
The short - I suspect that my 14 month old might have a wheat or gluten intolerance/allergy of some sort or another. Most of the info I find on the subject is directed at adults, and a great deal of it is conflicting. I really have NO IDEA where to start.
A little bit of background - fourth baby, normal pregnancy, wonderful homebirth. No issues with breastfeeding. She was colicky from the first night, though, crying for probably 6-8 of her first 12 hours. Four months of intense colic, another four of (slightly less-intense) colic, and another four very irritable months. Since around her first birthday she is a little more mellow, but evening screaming bouts lasting 1-3 hours still happen 2-4x/week. She started solids (eating her choosing from our plates) around 7 months. The consistency of her stools remained more or less the same despite the solids, but took on a particularly offensive smell. Growth: She was born 7lb11oz, and gradually dropped off the charts, but my other three children have all been remarkably small as well. Her percentiles are comparable to #3's at the same age. At her 1 year WIC appointment, due to concern over her weight (below the 3rd percentile), the suggestion to "add extra carbs" to her diet was made. I dismissed the recommendation, but (with bread on the brain) I began to notice that she never picked bread/cereal/crackers from my plate, and when offered these items she was refusing them, prompting the suspicion that this may be a wheat or gluten issue. Family history: my second child had a (suspected) dairy protein intolerance that he outgrew around the age of 3. Otherwise, to my knowledge, no family history.
As an experiment, around a month ago I began to "limit" wheat/gluten - ie if it *obviously* was a wheat product (bread, pasta, crackers) I kept it away from her. I was unable, at the time, to eliminate gluten entirely, nor do the research I would have liked to do at the time. In the past month I have observed the most solid stools she's ever had - these stools smell like "normal poop" (sorry...). We have slipped up a few times, while traveling, or when a sibling fed her their sandwiches. She has, on these occasions, reverted to her very very soft/slimy/stinky stools. I will be the first to admit though, that this is still just suspicion. We never fully eliminated wheat/gluten, and I have not been keeping a food diary, so it could very well be something entirely different. On the surface, though, my experiment has me convinced that I'm looking under the right rock.
I am working on gathering enough information/recipes etc to fully eliminate wheat for a time. I would also really like to gather some information, have an understanding of what we might be facing before I take her doctor and have her put through the ringer as far as tests go - some of the testing (scoping, specifically) would likely involve international travel which under any circumstance would be undesirable, but would currently border on impossible. So lay it on me ladies! Where do I start?!?!
Extraneous information - I know you ladies are kind and welcoming and would never judge, but I feel the need to defend myself for not noticing that something was wrong sooner, and not starting a full elimination and research sooner - I won't bore you with the details but my family has been put through the ringer in the past few months and many days we were just happy to have the time to put together any meal. I feel terrible that this has gone so long unnoticed and then so long ignored, but I'm really doing the best I can. <3
So, figuring this stuff out is really hard! And sometimes it's really not obvious at all, so it's good that you are picking up on it and are trying to get through this :)
If I were you, I would try and get the entire family gluten free. It will be really hard to do, but it's possible that all or any of you have an issue with it, particularly since you mentioned that all of your kids are on the small side. It can take anywhere from a couple of weeks to a couple of months to truly "normalize" after taking the gluten out. I think that you would notice changes after a few weeks though.
I did a mini elimination diet when my DS was having a lot of GI issues, and I have been shocked by how much better I feel. We are gluten sensitive, and eating something "contaminated" will cause GI issues with my DS, and it will make me feel weird and creepy crawly. It's a really strange sensation and hard to describe. For us, only having a sensitivity, the effects wear off relatively quickly - within a few days.
In terms of being diagnosed as having Celiac Disease, I think there is a blood test that may or may not be helpful - many people who consider themselves gluten sensitive get a negative result. The best way to diagnose it would be to get a look at the GI tract and see if it's inflamed, and you would have to be eating gluten for that to happen, so if you have eliminated it, the test would come back negative.
I would recommend taking gluten out of your diets and seeing how you feel. If it changes your lives (it may!) then I would think about how important it is for you to have an actual diagnosis, or if it's feasible to just keep away from gluten. Depending on how sensitive your DC is will define how careful you need to be with your food. There are a bunch of grains that are naturally gluten free (rice, quinoa, etc), and there are grains where gluten has been removed. Some companies are "cleaner" than others in terms of cross contamination.
It really is a guessing game, and it can be really hard to figure things out. I would definitely try to keep a food and poop journal for your LO. Each food that my DS is intolerant to has a different "profile" in terms of how he reacts and how long it takes for it to clear his system. We avoid dairy, soy, and gluten.
Also, you should try looking up a thread on here about healing a leaky gut, there is a TON of information in there that has helped us, and may help you too. Good Luck!!!
Mommy to DS born 11-10-10 And DD born 6-3-13
I will put in a vote for treating this first like a simple wheat allergy-- it's just easier to do and doesn't have involve the whole family. Another, lesser reason is that if it is an allergy, then going gluten-free can walk you right into other potential allergy issues-- rice, almonds, corn, etc etc. If you see an obvious improvement with wheat, get an allergy test. If the test is negative for wheat (not all tests are perfect, mind) then I would start suspecting gluten.
If you are all eating wheat/ gluten, you can start with a simple blood test. A negative result is essentially meaningless, but a positive result is definitive.
Once I was planning on doing a gluten elimination and decided not to in the end. Thank heavens! Because really what was happening was multiple not-so-severe allergies that all piled up to make me miserable, but no really obvious symptoms. Well, stupidly I let all the obvious stuff pass thinking it happened to everybody! No gluten allergy, but corn, soy, eggs, oats, rice, almonds, cashews, etc etc etc.
As your kids get older, they will start being able to articulate the subtler symptoms to you.
Don't feel bad for not catching this-- I let so much go by with myself and my daughter as to border on negligent, that's how I feel. You have to focus forward and that point and stop beating yourself up. These things can take a long time to process mentally, a long time to figure out, a long time to adjust. You are not in the emergency room, your child is not dead or disabled. You are figuring this out. YOU ARE GOOD! KEEP UP THE GOOD WORK!
"Let me see you stripped down to the bone. Let me hear you speaking just for me."
If you do persue testing, have in mind that results of the tradition celiac blood panel most likely will be on the more inaccurate side, as young children often have a higher incidence of false negatives, AND you have already limited gluten in the diet. If you are not eating gluten, there is nothing for the test to detect. On the other hand, you can get the genetic test, which looks for certain markers, and serves as an indicator that the possibility celiac is more likely than that of the average population, it is NOT a diagnosis. THOUGH, some savvy up to date Drs will consider a diagnosis IF there IS a genetic marker, past 'symptoms' and improvement on a gluten free diet.
If you want to pay out of pocket and persue this on your own, I have heard good things about the tests at Enterolab (online)
I (finally) found some good info on the testing. A scope/biopsy is simply not an option for our family right now, it will be several months before it's possible. If I decide to do any testing, I will push for the genetic test - I know that just because you have the marker doesn't mean you have celiac, and i know that there is a very small percentage of people who have all the signs/symptoms of celiac but no marker, but it seems like the most reliable "no" out there, and really I don't want to bother with testing just so I can get a "well, the test says no so... maybe?" that's just not worth it. So I'm going to be sure to go in with her having been gf for a while so i can say "but the blood panel wouldn't tell us much now, since she's been gf for x weeks" :-) (if I decide to pursue a diagnosis)
I would be very carful with the decision. If you ever think in the future you WILL want a 100% dx, you are WAY better off doing it now before going GF. To put anyone back on a gluten filled diet for the purpose of dx is really really hard for several reasons. 1) You never know if you are causing "enough" damage to get the proper test results and 2) It is VERY hard to go back to feeling like crap for up to 3 months for the purpose of a dx.
If you have a child that will be in public schools (including college) there are reasons one would want a true dx.
The genetic test is NEVER used for dx, it is just a tool to r/o Celiac.
can you explain why one would need a dx for school (aside from school lunches and such..) particularly college? we are planning to homeschool but who knows what the future holds in store for us.
And so what would give us the dx we would be looking for in that situation? would the blood tests in isolation work? the scope is simply NOT an option at this point. I am a military wife living overseas with my four children (14 m, 3, 5, and 6) while my husband is deployed. They would have to send us to Walter Reed for the scope. International travel by myself with four little ones isn't happening, and besides it is highly unlikely that they would provide tickets for the other three children. I am not willing to leave them on another continent away from both myself AND my husband. It is simply NOT an option just that some random doctor can give me a piece of paper that tells us something that (theoretically) by that point in time we already know. (sorry if I sound defensive. I kinda am, but it's about me and my situation, not you. the timing of all of this just BITES.) Of course I want the best for my daughter, but I need to balance her needs with the needs of the rest of my family, you know???
First, please know I am not suggesting you need a dx. I can not even imagine the stress getting here to the states would be with four little and no help :(
Why a dx: There is something called a 504 plan here at the public schools. This is a legally binding document that protect your child at school. It does cover school lunches but goes beyond that! It covers things like:
Art classes (GF paints, GF pastas for pasta art)
Notification when parties are coming up (so you can plan accordingly)
These are just a few of the things my newborn-up-all-night mind can come up with now. I know there are more I am just to thinking clearly ;)
The blood work (all but the genetic test) needs to be done while ON gluten. Yes, there are false negatives BUT if you think there is any possibility that that is the issue, I would get the kid back on gluten (full on) and AT LEAST get the blood test. If that is neg, you can decide what you want to do. The genetic test isn't really great but it CAN rule out Celiac for the most part. You could at that point go GF with reasonable assurance you are dealing with an intolerance and not Celiac. I would think this isn't an IgE allergy. That's the kind associated with hives, breathing issues and ana reactions. So I wouldn't think allergy testing would give you any more clues (again, this is my Mom dealing with this stuff brain NOT medical advice at all!!!)
Our story: Asked ped to draw an Vit D. level, DS had none. Went to an endo who did Celiac blood test, very high numbers. To the Gasto, more blood work still very high. Wanted a second opinion, more blood, still very high. After agonizing over it we did biopsy. INCONCLUSIVE! Grrrrrr. We were given the option between re scoping YEARLY (No, no thank you!) or going GF and seeing what happened. It was at this point that they did the genetic test which was + for the two main Celiac genes. After 6 months being GF his ttG went from 180 something to 48. So while we don't have a + biopsy, but our Dr. ad well as Dr Fassano (the go to Celiac guy in the US) say yes, Celiac.
:-( all the ridiculous runaround is exactly what I want to avoid. A very dear friend here has been through all this (still no answers.) and so much more. I was hoping that if I could figure everything out on my own and basically tell them "this is what I think she has, and x,y,z and a,b,c are why I think that." that they would confirm. :-( Off to do more contemplating.
It took us 3 months to decide to go ahead with the biopsy and then another three months to decide what to do after that. It isn't easy :( These are the things they don't tell you about when you get pregnant. All the really tough decisions you have to make and the worry that goes with them along with the "Gee, how badly am I screwing up my kid??" kind of stuff. (Not implying you are screwing our kid up, these are MY feelings on it).
Go with your gut I say. It's a tough call Mama. Hang in there!
This is an interesting read. You all are very helpful.
I'm new here so my posts are in moderation (don't know how long that takes) so thought I'd just start posting here with some people in similar situations. Last year I went to a ND and took an allergy blood test, a bunch of things (including gluten and dairy) were on there that I didn't feel had been impacting me. So, I've been GF and DF on and off, sadly it is harder for me than I thought it would be. I would like to do an elimination diet for a month, but I'm wondering if a month is long enough? Also, I recently went to a conventional doctor because of stomach issues, he says I have IBS, I also have been battling eczema for about a year now. Anyone else noticed a connection with IBS and eczema?
Another thing I am wondering about- as a child I never had food issues. Is it common to come into these intolerance problems as a 21 year old? And, for those who are on an elimination diet, what do you do if you mess up? Start over? I'm also looking for information regarding supplements. I've been reading a lot about probiotics, fish oil and flaxseed oil. I'm starting up with fish oil and a multi vitamin right now. Anyway, hope I didn't jack this thread. Any information is appreciated. Sorry I have so many questions. It is just so overwhelming to try to figure out by yourself! Coming here and reading has been a breath of fresh air.
Yes, and older.
"Let me see you stripped down to the bone. Let me hear you speaking just for me."