DD and I have all the signs of Celiac or dairy gluten intolerance.

[LionessMom]

DD1 has always been small. she threw up a lot when an infant, had mucousy poop, and her little belly stuck out. now as a 3 yr old, she still has a little appetite, little to no fat, a flat butt, her belly sticks out, bags under her eyes, smelly gas, floating bm,'s and a terrible temper. most of the time she is either sitting around or hanging upside down. i have fatigue, chronic constipation (that got better when i quit drinking milk), chronic heartburn (which got better when i quit drinking milk, i even stopped taking Nexxium). muscle spasms etc. i had lactose intolerance as a child. as a child i had a small appetite, lethargy, felt "different" all the time, labeled as ADD, and mood swings. i was diagnosed with fibro about 10 years ago. i do notice my symptoms get worse when i have eaten a piece of cheese or bread too.

where so i start?

i have at least 4 different threads around here somewhere bc i have no idea where to start. i need a diagnosis for sure. DH thinks i am a Hypochondriac sometimes who is just looking for something to be wrong. sigh. it does sound like she has it doesnt it?

[mama9]

Hi LionessMom, I don't have advice, wish I did, but it may help the mamas here if you mention in your thread if you have both been tested for celiac or not (in the past), and if both of your current diets contain any gluten. If not, mention here how long you have both been off of gluten. If you have tried eliminating gluten, how long for and did you see any improvements when you did the elimination?

I'm also thinking that I may have celiac or some kind of gluten sensitivity issue. If you are both currently eating gluten then before you go off of it (if that is what you decide to do) it may be a good time to get tested. I went to do a test which came back inconclusive because I have been off of gluten a few months. Apparently there is a place in the States (if you live there) that can do celiac tests (for the disease and for the gene) if you send them a stool sample and it doesn't matter if you are eating gluten or not. They are called Enterolab. Somebody let me know about them in one of my threads.

I wish you luck and good health!
xxx

[LionessMom]

sorry i forgot to mention that. there is so much going on right now. sigh.

we have not gone off gluten yet. i cut down but not off. i did cut out all bread and now bread hurts my stomach. i did cut out all dairy and now cheese makes my insides hurt.

i did get tested. a blood test for the gene. but i dont get the results for another few days. i am going to take younger DDs to the allergist to get tested.

i did feel better when i wasnt eating much bread and no dairy.

the point of listing all the symptoms was to see if other people thought it matched celiac before i got DD tested.

[scsigrl]

You have some things that sound like it could be but that can also be signs of a lot of other things.

I would get tested, a Celiac's panel, not just the genetic test. 80% of people are + genitally speaking for Celiac's. DNA is just a blueprint, different builders do things differently and may or may not get the job done the same way.

I would have DD tested but that is based on what I have been through with my son. It is a simple blood test. I think it is really important to know what you will do with the results too. If you will/won't do the biopsy if the test is +, if you will just go gluten free and retest later. Also, you MUST be on a gluten containing diet before the test.

Good luck.

[mamafish9]

I'd do a full celiac blood panel (tTg is the most important), and also IgG testing for gluten. Maybe celiac, maybe just gluten intolerance, but either way, it would give you a definitive test for your DH. They may want to do a scope for a definitive diagnosis of celiac, which I wouldn't do in most cases (the tTg blood test is very accurate, several other countries usually accept it for celiac diagnosis for kids). But an IgG intolerance means you should take out gluten as well.

[LionessMom]

so the doc just called. they got the results for me back and they found no allergy to whey or casein and no celiac gene. so i asked them to send us all to the allergist to get full work ups done. cause i know that i feel better when i dont eat dairy or gluten and i know i was lactose intolerant as a child.

i wrote down the recc'ed tests from below. what else should i ask about?

[mamafish9]

There's dairy allergy & dairy intolerance - and an allergy doc will almost certainly only test for allergies.

[flightgoddess]

well, then maybe it is just wheat and not all gluten? Wheat has two main parts, gluten and gliadin. Maybe you react to the other part? And if it is NOT an allergy, no allergy tests will catch it. It might be a food sensativity or intolerance. Maybe it is something else in your diet....if you are willing to go a different route than the traditional MD, you could go to a chiro or naturopath or nutritionist that does ALCAT or ELISA testing (or maybe do it on your own?), which are for food intolerances, and IgG or IgA reaction I believe? . Google ALCAT and you'll get their website/explaination. Oh, and I tried to explain the test to my allergy dr and gastro dr, and they were no help. Traditional allergy testing is for IgE reactions.
I did the ALCAT through my chiro, because of leaky gut I was mid-mildly sensative to a fair number of things, but gliadin (wheat) was way out there. I also reacted to barley. I don't recall if rye was on there. So, the way it works is you go on an elimination/rotation diet for 3-6 mo, and then you can reintroduce the mild foods, etc. But probably don't reintroduce the severe foods! I definately had negative consequences when I trialed a little barley and wheat! So I am gluten free because that covers all the things I need to watch out for.
So anyway, you may have to look in a different direction to get answers!

[dakotablue]

I'm on a wheat free diet.

I had every test for Gluten allergy, even the one where they look at your stomach. Everything came back that I wasn't allergic.

Anecdotal, I have asthma issues when on gluten and I have mood swings, stinky as and I CRAVE bread like crazy when I eat it.

I am wheat free because no matter what the tests say It's not good for me.

Dairy...I found after I'd been gluten free for a while I could tolerate dairy much better...but I think that also may have to do with my tendency to eat them together, like cereal and pizza.

[LionessMom]

i had soup for dinner. it was a chowder i made with ham potato and chhese sauce (cheese milk and flour). within one hour my head and face itched like crazy. red marks. my scalp feels crusty and i get little pimples on it that crust up. bread makes my stomach hurt.

i dont think naturapaths are legal in iowa. i cant find any anyway. and my chiro cant do anything except adjustments. i wrote down the tests and if they wont do them, then i will see who else my reg doc can send me to.

[mamafish9]

So it seems clear that you react to gluten and dairy - a test may confirm what you already know, but in general, experience trumps tests (tests can have false positives & false negatives). Whether you are celiac or "only" gluten intolerant, it sounds like you would be healthier and happier off gluten. Is it only for your DH that you are pursuing a diagnosis, or are there other factors? Or can you just act on what it sounds like you already know, and take at least those two foods completely out of your diet?

[LionessMom]

DH has a tendecy to not believe it unless a doc says so. esp for DD1. he will give the no foods to her unless i can prove she shouldnt have it.

[mamafish9]

Well, a doc may give you a celiac diagnosis for DD with just a blood test, but many still require a scope (which involves general anesthesia) for an official diagnosis, even for a child. And you may well just have gluten intolerance, rather than celiac, which most mainstream docs won't diagnose. You can order the tests yourself for IgG - would your DH believe a medical test result?

If not, I think honestly it would be more effective to get some help convincing DH food intolerances can be real and severe, rather than chasing a diagnosis. If you go gluten & dairy free yourself, and he sees your improved health, is that likely to sway him? It may be that once your daughter is free of her problem foods, she will have a stronger reaction when she ingests them as well. Could you get your DH to commit to entirely gluten free for 6 weeks for your daughter, and measure her growth/weight gain?

[LionessMom]

that would probably work. for him.

i have this friend who regularly has her DHs daughter over. the mom told her she shouldnt drink milk that she has a lactose intolerance. but since she said allergy and the doc said no allergy, they give her milk every time she is there anyway. i just know that no one will believe me without a doc saying so. and a test to back it up. i told DH that the doc said to quit giving her dairy to see if she gets better but every time i turn around he is giving her a glass of milk and buttered bread.

[mamafish9]

Originally Posted by LionessMom

that would probably work. for him.

i have this friend who regularly has her DHs daughter over. the mom told her she shouldnt drink milk that she has a lactose intolerance. but since she said allergy and the doc said no allergy, they give her milk every time she is there anyway. i just know that no one will believe me without a doc saying so. and a test to back it up. i told DH that the doc said to quit giving her dairy to see if she gets better but every time i turn around he is giving her a glass of milk and buttered bread.

It sounds like even with the doc saying so, your DH isn't respecting either your decisions or the doc's input. However, you know you don't do well on dairy & gluten, but you still eat them. Perhaps that sends mixed messages to your family about the importance of avoiding these foods?

Kids with celiac or gluten intolerance that eat gluten can develop really serious health issues - it just might take years for them to develop. It sounds like that might be the case with your fibromyalgia.

I wonder what would happen if you had your DH do a little case study of your DD for a week - track how often she loses her temper, sleep, behaviors. Also note her weight, height, take some measurements of her belly, etc. Maybe do the same for you as well (with symptoms he can observe - you can add your notes too, but the idea is to note objective things he can see). Then do 6 weeks dairy & gluten free (both you and DD) and repeat the week tracking behaviors & sleep. Redo the measurements. You should have some pretty clear data points about what improves when you are both ENTIRELY off dairy & gluten. And hopefully you'll have more buy in from DH. That's the first step, then you can take on other family members who may not take food reactions seriously.

[LionessMom]

Originally Posted by mamafish9

It sounds like even with the doc saying so, your DH isn't respecting either your decisions or the doc's input. However, you know you don't do well on dairy & gluten, but you still eat them. Perhaps that sends mixed messages to your family about the importance of avoiding these foods?

Kids with celiac or gluten intolerance that eat gluten can develop really serious health issues - it just might take years for them to develop. It sounds like that might be the case with your fibromyalgia.

I wonder what would happen if you had your DH do a little case study of your DD for a week - track how often she loses her temper, sleep, behaviors. Also note her weight, height, take some measurements of her belly, etc. Maybe do the same for you as well (with symptoms he can observe - you can add your notes too, but the idea is to note objective things he can see). Then do 6 weeks dairy & gluten free (both you and DD) and repeat the week tracking behaviors & sleep. Redo the measurements. You should have some pretty clear data points about what improves when you are both ENTIRELY off dairy & gluten. And hopefully you'll have more buy in from DH. That's the first step, then you can take on other family members who may not take food reactions seriously.

those are good ideas. thank you.

[LionessMom]

the allergist appt is on mon. it will take hours..... but i will have some answers. i already know i have intolerances, and pretty sure DD1 & 2 does too but i really need a doc showing it. otherwise no one will believe me. sigh. so if thhe allergist cant do certain tests i will have doc refer me to someone who will. i need to know it is not all in my head. my doc cant tell me what is going on with my scalp and niether did thhe derm. they all thought it was just reg scalp derm etc and gave me stuff that didnt work. i know it has to be some kind of allergy or reaction of some kind. i just cant take it anymore. they all say "just quit scratching" and it really is not that easy. it is worse after i eat anything with dairy and better if i dont. it also gets better if i use the babys aveeno bath wash for shampoo so i am thinking it is a chemical senstitivity and i should just start shamppoing with cooked oatmeal water .

on a positive note, since i cut out drinking milk and eating cheese for DD1 her little belly doesnt look distended anymore. she still gets some dairy here and there but not as much. i give her almond milk with her cereal. i need get her to eat soemthing else for breakfast. for now though at least it is a rice cereal with no wheat. her under eye circles look better until she has soem butter or a biscuit or something and then they come back. i have laso been giving her vitamins. she is looking so much better lately. i know i am on the right track.

thank you for your ideas. DH is starting to see the differences too and that is working for him.

[kjbrown92]

My DH loved the clear cause-and-effect that showed on the food diaries/journals that I kept for the kids. Most allergists don't believe in intolerances, and won't test you for them, even if they rule out allergies. So you may want to prepare for that. There are IgG tests out there, and ALCAT testing. A doctor can order them, some you can order yourself, but pay out of pocket. Any doctor worth his salt though will say that reaction trumps results.

[LionessMom]

DH believes me now. at least on the dairy issue. i still want to get DD1's blood drawn for a celiac or non gluten celiac test. he just doesnt want to believe something could be wrong with his kids. but now he understands why i am worried about DD1's under eye circles so we will be going around to see if we can find out anything.

both DD1 and DD2 did better without dairy. after going without for the last month we brought cheese back in the last 3 days. DD2 immediatley got diarrhea and DD1 started acting funny again and saying her stomach hurt.

i found out that i was allergic to everything they did a skin test on me for. including my dog and cats, 10 types of trees, 6 types of grasses, mold, mildew, cockroaches, and dust mites. dust mites was the strongest. i am not sure if that explains my head itch. i get little blisters that erupt and get a crusty sore.

we will be going to our reg doc to draw dd1's blood for milk and gluten allergy, then a gastro for a lactose intolerance test (apparently they do a breath test i guess) and a derm for me to see if i can get some answers.

i just cant live like this anymore. my poor dd1 looks so sickly