Update And Need Help

[moonlitemama]

What a great resource! I've been mostly lurking here for a few months and have learned a great deal. I posted my intro a couple of months ago, but haven't had a chance to post again since (it's here if anyone wants to read Open Original Shared Link

So, in a nutshell...I've been having GI issues since Nov. 2006. I've been tested for a lot of things through various doctors and all came back negative. Started looking into food intolerances on my own. Eliminated soy and dairy for a month (May) - some help, but not a great deal. Since June, I've been gluten-free. Mid-July I dropped glutimates (MSG, etc). I've been dairy-light all summer. I'm feeling much better than I was, but still have some off and on issues w/ D and gurgly stomach/gas.

I had an appointment with my internist last month and she was ready to chalk it all up to IBS. I was thrilled that she was willing to hear out my conjectures about gluten - she didn't know much about it, but was willing to help me test things out. She said the dietary results seemed promising. And was intrigued by Enterolab. She suggested that I do the testing through them and see where that got me before we pursued IBS any further.

So, I got tested through Enterolab and just got my results back. I'm hoping someone can help me interpret my results a bit more.

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A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Antigliadin IgA 20 (Normal Range <10 Units)

Fecal Antitissue Transglutaminase IgA 19 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score 1226 Units (Normal Range <300 Units)

Fecal anti-casein (cow's milk) IgA antibody 18 Units (Normal Range <10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0501

HLA-DQB1 Molecular analysis, Allele 2 06xx

Serologic equivalent: HLA-DQ 1,1 (Subtype 5,6)

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So, what I'm understanding (please correct me if I'm wrong) is that I'm gluten intolerant (but not Celiac) ? And that I'm casein intolerant.

So, what is different between Celiac and gluten intolerance? Does gluten intolerance ever go away or is it lifelong? Does it cause the same damage as celiac?

Can the casein intolerance resolve as my gut heals?

And finally, what are everyone's thoughts on having my children tested (and if so, what is the best method? They're 7, 5 & 22mo). My husband and mother don't see any point as they're not having any issues. However, I especially suspect my 22mo old may have an intolerance issue as he has bowel issues and a lot of diaper rash.

Thank you so much for any input you can give me!

Raechel

[AndreaB]

Raechel,

From what I understand gluten intolerance and celiac are still gluten free for life. Enterolab says casein free is also for life. I'm not really for dairy but if you want to try dairy after you get yourself cleared of whatever is causing problems than go for it. There is one other poster that I know of that can eat dairy who tested positive through Enterolab. Remain gluten free and go dairy free until you get your answers and treatment though. Dairy causes enough problems on it's own.

There are some on this board whose intolerance was a result of chronic illnesses and they may be able to eat gluten occasionaly or at least not be concerned about cc issues but that is not the norm.

With your fecal fat score and your increasing intolerances I would highly recommend further testing.....preferable in the alternative or integrative health care area as they are more reliable for a variety of tests.

My oldest son (5 next month) tested for low malabsorption. We've just started treatment with him but he has candida and mercury that we know of at this time. Candida overgrows to protect the body from metals for one and can punch holes in the intestines. Mercury can also cause other food intolerances but so can other things.

The quickest noninvasive results would be from a good kinesiologist (sp?) or someone who does a form of muscle testing. We go to a practitioner who does ART. There are many people out there who do this type of testing but not all of them are good. Check around and get references if you can. I don't know where you live but I'll try to help if I can.

[gfpaperdoll]

Hi & welcome, you have the dreaded double DQ1 genes That means that you can also have neurological problems & other food allergies, which seems to be common with DQ1. I am double DQ1 as is m family & some friends. including myself I personally know 4 people that have DQ1 & cannot eat dairy. I keep trying to add it back in, but it is not working. I have been gluten-free for 3 years now.

Enterolab is very helpful to answer any questions that you have about your tests. You can email them & will get a reply.

You can read a bunch of threads about the difference in celiac, gluten intolerance, gluten allergy, gluten ataxia, ... I just call it a gluten problem you have a gluten problem & will always have it, symptoms go away on a gluten free & for you dairy free diet but you can never eat it again, if you do you are at a huge risk to get another auto immune illness & to get the symptoms back 10 times worse than before. Good incentive to stay off the stuff. With us DQ1's I think the gluten & dairy is very addictive. Once you are off it, you should notice a huge difference in the way you feel emotionally & in the loss of food cravings...

You should take a B12 everyday for the rest of your life.

Each one of your children has a DQ1 gene from you. If you have two genes you pass one to each child. If you only have one gene you have a 50% chance of passing that gene to each child. Your children could very possibily have two copies of the DQ1 gene. My grandchildren have two copies of the DQ1 gene. I have done an informal survey of my own & it seems that people that have the DQ1 gene seek out other people that have the same gene for their mates, I think this is very

interesting...

With your malabsorption I would very strongly advise you to eat only whole foods & skip the processed gluten free stuff. I suggest grain free except for rice & some cornmeal & white corn tortillas - BUT do not eat them everyday & not at every meal. The exception would be if you are underweight you would need them for a carb... I would also not add in soy, as in soy milk or tofu, no one needs soy & a lot of us cannot tolerate soy. Just eat meat, seafood, veggies, eggs, fruit & nuts for a few months & then one at a time add in a gluten free treat - & see how you feel...

I will go back & read your first post. I am really interested in all the symptoms us DQ1 people present. Please post any info on your kids. How are their teeth? My grandchildren are not gluten-free & they are having problems with their teeth. Do your kids have Asthma, hives, rashes, constipation, ear infections, excess ear wax, anemic, or failure to thrive, overweight? Those are a few things my double DQ1 granskids have.

[moonlitemama]

Thank you both for your replies!

I'll have to look into vitamins & supplements more. Right now I'm not taking any, since every time I'd buy one, then I'd wind up eliminating one of it's ingredients the next month - just got too expensive to keep throwing them out! Anyone have any good recommendations for a multi without gluten, dairy or glutamates? And they have to be small or chewable - I can't tolerate swallowing the huge horse-pills everyone seems to make these days.

I'm trying very hard to work out my diet. I have a very hard time with a very restricted diet. Especially since I have to cook for the rest of my family as well. I have been completely gluten free since June (however, I probably still get cc occasionally due to the rest of the family. I'm doing my best on that front. I don't do completely whole foods, but I do bake/make nearly everything from scratch. I think it's the lesser of the evils, since I don't have the willpower to go completely without baked goods. I do limit (nearly eliminate) soy from my diet. I have no idea how I would rotate my foods - I feel like I have so few food choices right now anyway, I don't know how I'd rotate whole food families.

My kids seem to be okay. No major red flags. My toddler is the only one that I really think has a likelihood of having a gluten problem. He has a lot of D and very foul stools and diaper rash. He seemed to do better when I had them off gluten the first week I eliminated it. His teeth are also really bad - the enamel is virtually gone from his top front teeth. Dh chalks it up to ds hitting his teeth pretty hard a couple times and the dentist's answer is "bottle rot" (mind you, he's never once had a bottle). Is the Enterolab testing reliable for a kiddo this young? I'd hate to take him off gluten if it's not his problem (mostly because it would be so hard to do if his brothers are still eating gluten) or if he'd later need to go on gluten to carry out testing.

Raechel

[gfpaperdoll]

I think enterolab is the only way to go with children that young. I do not want to hurt your feelings but I think that gluten is not good for anyone, especially kids that have parents with the problem and the siblings of gluten problem kids. but it is a process you might come to that conclusion on your own in time... You can only take one step at a time & you are doing the right thing in checking out your baby.

If you can handle the grains that is good, we are all so different. Just be sure that you are not using wheat flour in cooking for your family as that stuff will contaminate you when you breath it in, plus it just plain poofs up everywhere & gets on everything.

keep us posted. oh & that enamel thing, my 9 year old overweight granddaughter has that, she is also double DQ1 & it is totally caused from the gluten, your husband might be like my son, who keeps his head stuck in the sand & refuses to educate himself on this stuff & thinks it is just because they do not drink enough milk and brush their teeth right... WRONG, but of course they get the same dogma from the idiot dentists... Poor kids being blamed for something that is not their fault.

[gfpaperdoll]

I do not know about multi vitamins, I do not take one. I always have problesm with them...

But I do take a B12 everyday & can tell when I miss it.

If I were you I would just start with a sublingual B12, just make sure it is gluten free

[AndreaB]

If your son has enamel defects I would highly suspect celiac with him.

I use Freeda brand vitamins. There website is www.freedavitamins.com

They are free of lots of things.

Enterolab would be a good test for your son with him being so young. I've heard blood tests aren't real realiable with the young ones but you could always try and see what comes up.

[moonlitemama]

Thanks again for the input!

Andrea- I'll look into the Freeda vitamins; thanks for the suggestion.

Gfpaperdoll- No hurt feelings here. :-) I would rather everyone in the family went gluten-free. I haven't researched a whole lot yet about how bad gluten is for everyone, but I've heard it repeated here quite a bit. And having them gluten-free would sure make my life easier. However, dh isn't on board with it, so that would make it tough. And my eldest fought it pretty hard to. So, I have to pick my battles and weigh my options.

Yeah, I haven't been using any of the gluten flours for a couple of months now. The other day I finally cleaned out that cupboard and decided to give them away. If the rest of the family wants a gluten baked good, we'll just have to buy it. Otherwise they can "settle" for a gluten-free treat that I've made.

I'll probably wait just a bit and see if my insurance really reimburses me for my Enterolab tests before I test my youngest (otherwise, I'll have to save up the money first). I may start him on a gluten-free diet sooner though, since it doesn't matter with Enterolab.

Thanks again!

[jmd3]

I haven't researched a whole lot yet about how bad gluten is for everyone, but I've heard it repeated here quite a bit. And having them gluten-free would sure make my life easier. However, dh isn't on board with it, so that would make it tough. And my eldest fought it pretty hard to. So, I have to pick my battles and weigh my options.

Check with your local library and see if they have a book by Mellissa Diane - " Against the Grain " I think you will find this a big eye opener! A very good read, and there is also some qestions to see if you are carb sensitive, wheat sensitive, etc...

I made my house gluten-free, and if anyone wants gluten they can go and get it. It is safer for me, and I am watching out for me. I tried the everyone else could eat gluten inthe house, but there was too much cc, so - no more gluten here. By the way, If I happen to be away from home for more than a day, visiting parents, my husband has a gluten fiesta for himself...But he is great, no pressure about no gluten, and that makes our home a happy home. He knows how sick I was, and he doesn't want to go through that ever again. He had to take a family leave to take care of me for 4 months, that was without pay or help from anyone, or anything - talk about tough, we are still playing catch-up!!!!

I am having an extremely hard time getting my girls tested for the celiac gene from their doctors. Their peditrician won't do it, my GI doc won't do it, and I suppose I will have to do enterolab on my own. ($369 each) Enterolab can detect gluten for up to 2 years, even if you are not currently consuming it, I believe that is what I read, and milk problems for up to a year. I took my youngest daughter off gluten, and almost all of the high fuctose corn syrup. We are not eating many processed foods right now - no can, no jar foods. Both doc's keep saying not at this time for testing, and don't punish them for my problems, and it is not fair that they eat this way for the rest of their life - blah, blah, blah... I have adapted a mostly paleo type diet, with a few ocassional treats. it is working for us, I have noticed a big change in one daughter's attitude without processed foods. She even notices a big difference....she had some kind of wheat product at someones house, and in the middle of the night I got a call that she was having an allergic reaction...she asked to come home, and on the way home she asked if she could get a new lunch bucket for school because she didn't want that to happen again. I itched like a crazy person for several years, and the doctors all told me they had no idea what it was. (Wheat) My little girl was on zyrtec for several years because of itching, and a rash, which I now think was DH... now there is no wheat, there is no need to take zyrtec - imagine that. But I quote the doc's again - "no need for testing at this time" Uggggh, this pulls my chain.

okay, stepping off the soap box