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Old 02-21-2013, 11:59 AM   #1
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I am convinced my DD has celiac

I am convinced my daughter has celiac but every test shows she doesn't. She has had "tummy trouble" for about a year now. The ped treated it, the ped endocrinologist she sees for tyep 1 diabetes tested for celiac and the markers are "not there", the ped gastrologist diagnosed her as having acid reflux. The ped gastroenterologist also did an ultrasound of her gallbladder and it is as healthy as can be! So we have ruled things out, but that celiac still lingers in my mind since she already has a few auto-immune issues. One more won't surprise me.

She has missed the past 2 days of school. I cannot see her in pain any longer and we are very frustrated in what to do for her. Her old meds we treated her with in the past are not working. We thought she would be Ok today, but she is still doubled over in pain. So since the acid reflux meds are not working I bought some digestive enzymes for celiac. I hope these work. My question is has anyone found a supplement for when you do ingest gluten? Does anything take the pain away? What I bought says it helps with gluten and casein digestion (she was tested for milk allergies and we were told she had none ). Has anyone tried something like this? I need her to go to school. She is in 6th grade and is not allowed to miss more than 10 days. She is meeting that limit with her doctor visits already to the endo. Add this issue to her ailments and it adds up quickly.

I hope someone has tried enzymes for celiac with some relief!!
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Old 02-21-2013, 05:41 PM   #2
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Quote:
Originally Posted by dawnyama View Post
I am convinced my daughter has celiac but every test shows she doesn't. She has had "tummy trouble" for about a year now. The ped treated it, the ped endocrinologist she sees for tyep 1 diabetes tested for celiac and the markers are "not there", the ped gastrologist diagnosed her as having acid reflux. The ped gastroenterologist also did an ultrasound of her gallbladder and it is as healthy as can be! So we have ruled things out, but that celiac still lingers in my mind since she already has a few auto-immune issues. One more won't surprise me.

She has missed the past 2 days of school. I cannot see her in pain any longer and we are very frustrated in what to do for her. Her old meds we treated her with in the past are not working. We thought she would be Ok today, but she is still doubled over in pain. So since the acid reflux meds are not working I bought some digestive enzymes for celiac. I hope these work. My question is has anyone found a supplement for when you do ingest gluten? Does anything take the pain away? What I bought says it helps with gluten and casein digestion (she was tested for milk allergies and we were told she had none ). Has anyone tried something like this? I need her to go to school. She is in 6th grade and is not allowed to miss more than 10 days. She is meeting that limit with her doctor visits already to the endo. Add this issue to her ailments and it adds up quickly.

I hope someone has tried enzymes for celiac with some relief!!
I never tested positive for it either but it was literally killing me and I only found out just how many things were to blame from eating it, by removing it. Even if tests don't show maybe do a trial and see how she feels. I felt drastically better after 4 days. When I slip up and eat it now nothing helps, I just have to wait it out and by 2-3 days I am back to feeling well.
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Old 02-23-2013, 12:29 PM   #3
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It took 12 weeks of being gluten free before I knew that I needed to avoid gluten, and I found out for sure by eating some. I had been gluten-free for 8 weeks when I ate some cake w/o thinking. I had no reaction, but my ND said 12 weeks, so I started over, and he was right.

I use Gluten Digest by Now. It's the DPP IV that my MD said to look for. At the same time, though, my ND said that they don't recommend this to people because people tend to use things like this as an excuse to still consume gluten. The problem is that the damage is still being done even if the person doesn't feel the symptoms. I use it when I'm eating something gluten-free that might have cross-contamination issues. I don't ever eat something if I think or know that it contains gluten. I have never had a reaction while using this before meals, but another ND said it's a coincidence and that DPP IV doesn't work. I still use it, though, just in case.

When I do have gluten accidentally, there is nothing that I've found to do about it except wait it out. Depression is a common side-effect, so if she acts out of sorts, that might be why.

I don't know what you know about gluten, but be sure to check all labels. ChapStick is out. I use Crest. Colgate caused a reaction in me even though it's supposedly gluten-free. Check medicines, too.

I would definitely try at least 12 weeks of gluten-free to see how she does. I've read that many people w/ celiac react to dairy in a similar way.

It can feel overwhelming, but it is doable. It just takes persistence and learning at the beginning. I am used to it, now, and you'll get used to it, too.
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Old 02-23-2013, 12:44 PM   #4
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Oh, the gluten ease I found had the DPP IV in it. Whew. I just want her pain to go away. It has, thankfully!! We are going to go the gluten free route but she is 11, has diabetes already and has problems with even more restrictions than the type 1 diabetes puts on her.

Thanks wendy!!!
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Old 02-23-2013, 09:23 PM   #5
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You're welcome! And I understand the food restrictions. I'm not 11, but I can hear what you're saying. I have allergies, intolerances, and hypoglycemia. One of my doctors recommended Whole 30 and I've enjoyed it more than LC, and it has helped to heal my cravings for carbs! Years ago, my ND recommended LC because of my hypoglycemia, but this is easier for me to stick to, and I love that it's helping to heal my body. Not saying that your DD should do it...just mentioning it since it's gluten-free and has helped me.
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Old 02-23-2013, 11:04 PM   #6
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Has she had blood allergy testing? It tests for autoimmune actions, not histamine reactions like prick testing.

She probably has damage in her intestinal lining and it will take some time to heal. Once damaged, other foods get "out" of the digestive system and the body attacks them as foreign invaders, then the body starts reacting to them too. The book Wheat Belly has a good description of what happens.

You can get the testing supplies online and and send blood samples in for results. She may need a pretty bland diet and some probiotics and healing foods for a while, but if she feels this bad she may be OK willing to go along with it.

In the end, you just want to help her. It really doesn't matter if you get an official diagnosis. I have found most doctors to be pretty lacking with this sort of problem.
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Old 02-25-2013, 06:20 AM   #7
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Thanks for your help ladies. When I took her to the ped gastro, I said "she has celiac". He told us "acid reflux". So that set the tone for him dealing with her. He wanted her off the meds the ped put her on, and just do diet. I was not happy at all. So that is where that went. I do have the name of a better gastro given to me from some in the celiac support group here in town. I have explored this avenue before and need to look them up again. I will do that! The digestive enzymes have helped in the interim. She was feeling better after the 2nd day of taking them. So back to school, for now.

Now what I have to do is what do I do now???? I guess just go gluten free and see how that goes.

Gina--she had some testing with the ped gastro. Had her allergy to dairy tested and I am not sure what else. I know it was lactose and forgot the others he put on the test. But they all came back clear. So he said she was OK eating dairy. She had been eating so much of that since being diagnosed as diabetic because she needs protein if she eats carbs. And the easiest/best thing for her is a cheese stick. I will look up that doc's number (gee I hope I still have it) and see if she can get in to see him. That guy is the best for celiac if you suspect it so I am told by the celiac support group.

The other thing is my doc told me I should go gluten free. Even if I don't have celiac she thought it would be best for me. So I need to switch us all over to going gluten free. I know I have to do it. Just don't want to right now because I have a more restricted diet to lose weight (but not forever!!) and when I make things that are either low carb or gluten free no one likes it, so I end up eating whatever it is. All of it!! I cannot eat any of it right now so I do not want to even try. I know, I know making excuses. But kids----UGH!!!

I will definitely update as I go along this journey with her. Thanks for your comments and concerns. I really do appreciate it!!!
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Old 02-25-2013, 05:52 PM   #8
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I hear you about negative to celiac

My son at the age of 2-3 had really bad eczema (weeping), had stopped growing (dropped from 50% to under 10%), had enamel problems, bathroom issues, etc... and we were arbitrating for growth hormone therapy. *I* took him off wheat for his eczema and bingo he started growing (and has since caught up) and his eczema cleared. He also has other issues but I won't get into the long list. Anyway he tested negative for Celiac also. He has BOTH the two common DQ genes for it but always test negative. But because of such improvement his ped said to keep him gluten free (I would anyway). (personally I don't think they know all the ways gluten attacks the body nor how to test for it all). Another factor is that Diabetics (Type I) have been said to be more likely than other since they are both autoimmune diseases.

Aside from Celiac your daughter could have a wheat allergy (not all allergies cause anaphylaxis but can cause inflamation that causes problems). Also if she has problems with dairy that often goes hand in hand with Celiac since the damage affects the production of the enzyme that digests milk.

Anyway, I gave up wheat and pretty much my VERY painful reflux has gone away (except occasional flares). My arthritis has gotten better and my feet and ankles hardly every swell any more. Crazy.

As for your daughter, I understand she's given up a lot, but as you know it is more important to do it all even if it's hard. Damage can be hard to fix since it's often unseen until critical. Also, regardless of what doctors say no one NEEDS wheat for a healthy diet, they just need protein, fats, mod carbs, fiber and vitamins/minerals. These days there are many viable alternatives out there for gluten free food options - I would just be careful as many gf foods can be higher in carbs or higher on the glycemic index. But used in moderation the foods are pretty good these days (as compared to years ago when we first started). Also look for low carb / gluten free recipes as you know there are pretty tasty recipes out there. That way her overall diet is much is lower carb and she could include some of the higher carb alternatives for bread/pasta.

Really there are breads now that are pretty good and I am not one to suffer cr*ppy bread (I'd rather eat no bread). Udi's is pretty good, bread, buns, wraps, etc. Namaste makes a great cake (even moist and spongy like cake)!

Anyway the sooner she gets it into her routine the more accepting and well routine it will seem. Hard to get going but once you learn not too bad.

Just a side note my son hated bringing his lunch so if you can get your doctor on board they can write a note for the school to make accommodation to the lunch menu (they won't give like gluten free bread but will often offer alternatives like more of something in place of bread or just hamburger no bun, no roll, etc.) - they should also be able to tell you what foods are wheat free (maybe not totally gluten free but wheat free). Be persistant if they have a cr*ppy nutritionist you might get some back push - some school districts are better than others.

If you want any ideas etc. some of us can either come up with some or point you somewhere that can.

hope that helps -- oh and I wouldn't trust an enzyme to control it ... it should just be used as a supplement to regular gluten free and in case you get accidental ingestion.

If she does have refllux (could also be from wheat/dairy/etc). then you can try to incorporate some Braggs Apple Cider Vinegar (either in water/honey mix or in a salad dressing). the Cider Vinegar alkalyzes and really can help with digestive issues due to acid. Reflux medicine can actually make reflux worse in the long run from what I've read - should be used probably only in acute pain to get under control while incorporating other steps to mitigate the acid. Also whichever Cider Vinegar you use make sure it's the "cloudy" type - it is the type that has all the properties you need not the sterile clear kind.

Sorry my post is kinda long winded .. so if you get this far I hope your dau gets better.
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Old 02-25-2013, 06:05 PM   #9
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testing

also you can have her lab tested yourself for celiac. It's not too bad a price except for the genetic ones. Make sure they test to ensure that she has enough antibodies to even show - a great article that talks about testing and what alternatives are:

Confirming a Diagnosis of Celiac Disease - NYTimes.com

(ps I do not agree with her on the not going gluten free on your own - if I left Christopher to that he'd be about 3 ft tall, etc. etc. - and I hate when people say not eating wheat can cause nutritional deficiencies. <snort> the only reason wheat is so "nutritious" is that they fortify it. There are other foods that can fill that supposed nutritional void and better by it too).

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Old 02-25-2013, 06:13 PM   #10
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crystal---too funny on the apple cider vinegar. We have tried our darndedest to get our DD to take it. She did ONCE and it came right back up. We really do feel she would be so much better off with doing that rather than that prevacid. But she cannot tolerate it. And forget those pills---we have to either have chewables or capsules we can break open. That is what I am doing with the enzymes. Breaking open and giving them to her sprinkled on food. Do the same with the Prevacid. Cannot win with her. And the doc did say she was not lactose intolerant, which we all thought she was as well (with her background). The tests don't show she is anyhow, so cheese it is! Thank goodness for that.
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Old 02-25-2013, 06:16 PM   #11
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You can have an allergy (or intolerance) to the protein in milk as well as the lactose. It is more rare, but if you can't isolate anything else that is bothering, you might check that.
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Old 02-25-2013, 06:38 PM   #12
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Lactose intolerance is not the same as a milk allergy. They are actually two different mechanisms. Lactose intolerance is where your body does not produce enough enzymes to break down milk sugars (lactose). An allergy is an IgE reaction to the proteins (e.g. casein) found in milk. (the only reason I bring up is cause doctors tend to be so dismissive if you use wrong terms). The IgE reactions typically can be increased heartrate, rashes/hives, swelling (mild or severe), anaphylaxis. Lactose Intolerance tends to bloating, stomach upset, etc. (digestive stuff).

Since she is a diabetic it is possible that she does have problems processing the lactose - fuller fat milk would be a better option. 1. per volume I think it has less sugar (I think anyway) and 2. the fat in full fat milk slows the breakdown and absorption of the sugars (hence better for diabetics). Of course docs probably say drink skim blah blah. (thereby voiding the science of insulin and spiking blood sugars. argh.

Cheese is probably better tolerated since it has already been through an enzyme/partial breakdown process and had tons less lactose per volume (look it up and you can see) - could be why she tolerates it better.

and yea I can feel her about the cider vinegar - I can't really tolerate it in just water myself (when I was younger I had to gag it down almost puked everytime ugh). That's why I do the Bragg's Salad Dressing - it's made with their Cider Vinegar (with the "mother"/good stuff) yet it tastes like salad dressing .. they have a couple of different types. And salads with varied greens are good. You could also use it on say a three bean salad, marinate meat, etc.

Another alternative to cider to use lemon juice - maybe not as good but not quite as nasty either. Put slices/squeezes in her water throughout the day (hopefully she drinks some water ..

As for digestive enzymes or probiotics the best way is to incorporate them into a smoothie (hide them in other words - smoothies can be low carb dairy free, etc. Just make sure you have one that would incorporate well. I know Andrew Lessman makes one that he said that people can use (pop open the capsule) that have had gastric bypass since you can stir it in a glass of water and it virtually dissolves and probably doesn't have much flavor. I'm sure there are others alternatives - just beware of the cheapies. If you do go a smoothie route .. I've really like the taste of Robb Wolf's protein powders (taste wise it's the one I like best and is more natural than some). And if she likes peanut butter - that masks pretty much anything ... Anyway YMMV.

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Old 02-26-2013, 12:17 PM   #13
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In case you want more info on this:

I have an intolerance to casein (milk protein), but not to lactose. Almost all dairy-free products have casein in them, so I can't have those. I have found a couple of "cheese" products that really don't have any dairy in them and are gluten-free, but they're made of rice, so not as low carb as real cheese.
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Old 02-26-2013, 09:12 PM   #14
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non dairy cheese

There is a cheese called or made by Daiya .. uses tapioca and pea protein it has about 7 gr per ounce might be better than the rice cheese. I've heard it's gotten pretty good reviews especially compared to soy. Meltable too.
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Old 02-27-2013, 07:27 AM   #15
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Ugh. We went the soy cheese route when the pediatrician thought her stomach issues (way back when) were related to dairy. Hated it!! Never tried it again LOL.

Now, NONE of my kids (I have 4) will sit down and drink a glass of milk straight. They don't like it, never have and I have never been one to push it on them. They don't like it, they don't get it period. End of story. Not worth the hassle. Being low carb for so long has taught me that milk is not that great anyway. That is why I didn't have to find soy milk, coconut milk or any other alternatives for the drink.

Now, dairy products---whole 'nother story LOL. She eats cheese at every single meal. Even DH made eggs with morning with cheese in it! Salad gets cheese, a piece of cheese with an apple. I mean all the time. So we won't do the cheese alternatives. She won't like them.

Thank goodness the doc didn't see any issues with dairy on her test results.
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Old 02-27-2013, 07:56 AM   #16
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I agree with her going gluten free. It won't hurt anything at all. It will be healthier also. Anytime I have gluten accidentally I take Benadryl and it actually relieves some of the abdominal discomfort along with the other allergic symptoms like fluid retention and swelling, probably because the stomach pain is an allergic reaction to the gluten. It does seem to help me.
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Old 02-27-2013, 08:35 PM   #17
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Good that she's not allergic to dairy. I love cheese (and ice cream ) and I'd hate it if I couldn't have it.... but my son is allergic (mildly now he's older) .. I went down the road trying to find substitute for dairy since I love it so much but he finally told me he doesn't even like or want it. lol. Guess you don't miss what you haven't really had.

And like you guys I do not like the taste of drinking plain milk anymore since I quit drinking it years and years ago. I've heard that there are better bio available forms of calcium in other foods (leafy greens, etc) anyway.
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Old 02-28-2013, 05:31 AM   #18
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Just downloaded a free ebook from jules gluten free. Yay!!! Today only it is free.
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Old 09-20-2013, 06:28 PM   #19
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Just reading this thread and wondering how she is doing now.
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Old 09-21-2013, 05:16 AM   #20
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She is much better. Her stomach issues right now are due to allergies. And comes and goes. It is not something that sticks around. It is hard to say what is causing "stomach issues", yanno? It could be ANYTHING. And that is what is frustrating about this whole thing. Have not yet gone gluten free though. Have to do that. I am the reluctant one though. I am just afraid that if I make these gluten free foods my kids won't eat them and *I* will be stuck eating them. I hate to throw away food and I cannot eat whatever right now--I am on a very restricted diet myself. I keep saying when I am done with the hcg I will start. And then I never do.

Anyhoo, thanks for asking!
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Old 09-21-2013, 01:52 PM   #21
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Thanks for the update. Hoping you find the solution.
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Old 09-21-2013, 03:42 PM   #22
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I have had ibs for 50 years. ibs means "I don't know what you've got."
Nothing helped. I never could connect it to any one food. Doctors after a while didn't even try to help.
Then I thought I'd try probiotics. After a while they made an enormous change in my life. I'm not what you'd call cured, but I don't worry about going out in public any more. If I have an "incident" coming on , I now have time to get to the br. No more embarrassing situations. What a shame to have suffered this long so unnecessarily. But at least I feel so much better now.
Hope this helps. I don't think there's any danger in trying this and it isn't too expensive.
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