Very New To This

[pmdny]

I am very new to this Celiac and gluten-free stuff. First I would like to start by saying that the villi in the intestines are NOT flat or so the GI Doc says however, the Gluten Antibody was almost 4x the limit for a strong positive. The GI doc says it's not Celiac and my MD says that she is willing to bet that it is, and that you can have Celiac for a long time and not have the villi be flat????? I have been gluten-free for 4 full days now and feeling better than I have in almost 6 years. I am however feeling like a goldfish in an ocean with the gluten-free food. I don't really know what to look for aside from Wheat, Rye and Barleyand I went shopping the other day and it cost me 106.00 for 4 bags of groceries. PLEASE HELP!!!!!

[erica]

It can feel very overwhelming at first but it gets easier with time. Check out this download (copy and paste to your browser):

Open Original Shared Link

Also, I would suggest a new GI.

[pmdny]

Thank you! That list will be very helpful

[mscriber]

Hi,

We are new here. My daughter is 15. 2 yrs ago she had a blood test (iGa, etc.)and they though she had Celiac's Disease. The biopsy came back neg. So, we went on our way tryig to figure out why she was nasuseated, had migraines, vomiting, occasionally diarrhea, constipated much of the time, and the list goes on. She was then 13.

Had a 2nd biopsy 6 mos after the first still neg. Month later was diagnosed as having seizures.

Now, another year later....migraines are worse, headaches every day....ugh! Pulled her out to home-school as was missing way too much school. She was hospitalized last week, had dropped 7 lbs. They did as ANA test and it showed titer 1:160 and specled pattern. Rheumatologist says it not Lupus...he again after looking at past tests and these again believes it Celiac's, but Gastro Drs disagree.

Anyone have any ideas???

[KaitiUSA]

When a blood test comes back positive most likely you do have celiac. Biopsies can be beneficial but only if there is enough damage to the intestine. My GI doctor is someone who works with alot of Celiac patients and you need a doctor who is very knowledgable in celiac. Celiac is one of the most underdiagnosed and misdiagnosed diseases.

mscriber-she should try a gluten-free diet. I would go to a doctor who specializes with celiac patients. I am 17 and my main symptoms before I was diagnosed was nausea, with occasional other things, and then I lost weight. I switched doctors a few times because they told me nothing was wrong with me and it ended up I did in fact have celiac.

pmdny-the villi does not have to be flat for you to have celiac. If there is not enough damage they can miss it completely. Your blood tests should be the story teller here in this case. My suggestion would be get a doctor who specializes in celiac. There are brands such as Kraft that will not hide wheat, rye, barley, or oats in any of their products. If you don't see wheat, rye, barley or oats on those labels then you are able to have those. You also need to beware of lotions, etc to avoid cross contamination. If you need any information let me know and I would be glad to help

[mscriber]

Thanks. I know my daughter will be glad if she could finally feel better. I am hoping to get her on here and involved and make some friends that understand what she's going through.

Thanks!!

mom of 15 yr old

[tarnalberry]

pmdy,

Unfortunately, I want to add that you need to avoid oats as well. That list should be a good place to start. Also check out the safe/unsafe list on the celiac.com main page.

It does get easier with time. I tend to stick with whole foods - nothing prepackaged or processed. It doesn't require as much cooking as you might imagine if you cook simply and eat whole foods plenty often. (Fruit and vegetables don't always need to be cooked. ;-) )

Assuming you don't mind skipping bread and baking (there really are plenty of things to eat even if you eliminate bread!), you can get pretty much everything you need at any regular grocery store. If you want baked goods, it will be a bit more expensive, however.

[mscriber]

My daughter really eats very little baked goods, doesn't like sweets or sandwhiches. She has been on this everything makes me sick kick, so tends to eat simply anyway. She prefers her vegetables raw, chicken is about the only meat she'll eat, but is a big pasta and soup fan. Pizza and Mexican food really make her sick, so that's what makes me think the last Dr. may be right. But, who knows???

[jknnej]

Eating gluten free doesn't have to be bad..it's only hard in the beginning, while you're learning. Just read posts on this board and you will learn so much!

I shop at my local grocery store and Trader Joe's usually, and online a bit. there are so many great products.

And, you can have meats. Go get some fresh chicken and marinade it with mushrooms, wine, and butter, or make yourself a great steak. There are soo many things you can eat without gluten.

I don't mind the diet at all; eating out is what's hard for me. I am a very social eater..lol and I really don't like to risk cross contamination-even when the restaurant says they're gluten-free.

so, that's my biggest complaint that I need to vent about. I want restaurants that are entirely gluten free! Wish I had the money to open one..lol.

[mscriber]

The restaurant issue is the biggest thing for us as we eat out after church services 2x a week. As a teenager she is a social eater, as well.

[KaitiUSA]

mscriber-have your daughter take enzymes to help with nausea....also altoids are good for that along with tummy mint and chamomile tea from celestial seasonings.

Also probiotics are good to take as well. Probiotic bacteria favorably alter the intestinal microflora balance, inhibit the growth of harmful bacteria, promote good digestion, boost immune function, and increase resistance to infection. Probiotic bacteria also produce substances called bacteriocins, which act as natural antibiotics to kill undesirable microorganisms.

If she wants to gain weight I know some good ways to do that. I lost weight but after going on a gluten-free diet I gained it all back

It's hard and sort of overwelming at first but when you get used to it it really gets easier. Contact me if you need info on gluten-free makeup, or products I would be happy to help

[mscriber]

That's interesting about the tea. Just recently I have started giving her tea to drink. That and mint are very soothing for her. It has helped soem with the nausea, too. I am hoping for a diagnosis soon. Hate to go gluten free if we are going to have to have another biopsy. Looking for a good DR. in Austin, TX or Dallas.

Merrie'

Daughter Chelsea

[jknnej]

Are digestive enyzmes over the counter? I'd like to try them but don't know where to get them. I left a message about them with my doctor but he didn't call back. I attribute that to poor office staff....

Anyway, any help would be appreciated,

jennifer

[KaitiUSA]

You can get enzymes at the health food stores around. I don't know what stores you have around where you live but I get mine from Whole Foods, Roots, or Common Market. You should be able to get them at one near you. If not just let me know and I can get you a link to find out about how you can order them.

[celiac3270]

Yes, start with the celiac site index, here. There is an abundance of articles and this will be your greatest resource for starting the diet. Go here for a list of safe and forbidden ingredients on the gluten-free diet. Try to schedule a biopsy as soon as possible, since she should stay on gluten until the testing is done so as not to affect the results. Finally, just ask if you'd like any suggestions about brands of gluten-free food. For a pasta replacement, for example, most will agree on Tinkyada and for bread, the top two are usually Kinnickinick and Ener-G.

For mainstream products, e-mail them for lists (Hormel, Oscar Mayer, Haagen-Dazs, etc.) Many gluten-free lists are in the Q & As on the websites, others you need to e-mail for. The easiest mainstream brand to get started with is Kraft--any gluten will be in the ingredients list so if it doesn't say wheat, rye, barley, or oats, it's fine. This way, you don't need to call about gluten in flavorings or modified food starch.

[sfortney]

I had positive bloodwork too. But the GI doctor did a biopsy and said it was negative, I'm fine. The thing is I'm not. So I decided that I had to do something on my own. Rather than keep being sick and hoping something will eventually shw up I decided to go gluten free for a while and see if it would help. It's now three weeks later and I am definitely feeling better. I can concentrate and do not feel constantly tired. There are still some gastric issues, but they don't seem quite as bad. I think that I either truly have Celiac Disease or gluten intolerance. Doctors don't always have the answers and sometimes things aren't always cut and dry with these diagnosis--I'm convinced. Hang in there! We're all learning together.

[mscriber]

Thanks everyone! Found a Dr. willing to see her on Monday! After days like today where migraine was a 6...ugh! I need some answers. Pain was so bad in her stomach I almost took her back to the emergency room.

Husband just had surgery yesterday so I was back and forth between sick beds!

Getting a little tired and cranky and have a sore throat!

She wanted a salad today, but refused anything with gluten because she flet so bad and she had a ton of gluten items yesterday. She's worried that if the Dr. we saw Wed. is right she's going "No more".

My parents are in town from OR helping us out right now and gave her biscuits and gravy which she loves and top ramen and all kinds of yummy stuff....Chelsea is now wondering if she's paying for it today...anyway back to the salad. she needed something bland...church is sending meals to help us out because husband and kid in and out of hospital...she just wanted salad, but we need to find a dressing...any great ranch dressings ???

[KaitiUSA]

Kraft has a whole bunch of dressings and unless the label says wheat, rye, barley, or oats it is safe. I use the Kraft Ranch dressing. Hope this helps

You and your family will be in my prayers

[tarnalberry]

Making salad dressing is fun and easy! Lots of room for experimentation, and "personalizing" the dressing! Cookbooks have recipes, and you can explore on your own once you've got the basics down. (Handy tip: dried mustard is a good emulsifier - keeps water and oil mixed together - and in relatively low quantities adds virtually no taste.)

[mscriber]

Thanks guys! I was worried about the modified food starch. So, it's ok? I will start buying cookbooks and food once we get some kind of word. Taking her in on Monday to new Dr.

[KaitiUSA]

In Kraft and some other brands it is ok. They will not hide wheat, rye, barley, or oats under modified food starch or anything else. Only some brands do that so you can't just assume whenever you see modified food starch it is ok. Only for the brands that won't hide it it's ok. Progresso also will not hide anything. Other brands such as Campbells you can ask for gluten free lists and they will provide you one.

If you need help with gluten free brands I would be happy to make a list for you. Yoplait yogurt is also gluten-free, and klondike, good humor, popsicle, and breyers will also not hide any wheat, rye, barley, or oats under anything. Those companies all you have to make sure is it does not say wheat, rye, barley, or oats which is a tremendous help to us but Kraft is the most celiac friendly company that I know of.

Let me know if you need anything and good luck....also you said something about your daughter starting to have seizures? Well that can come with Celiac I was reading that in an article this morning and thought about you.

good luck