?'s About Celiac In Adults... Symptoms And Diagnosis...

[rgeelan]

Ok for almost a year now my health has been going down hill. I have been getting more and more tired and forgetfull and my stomach is often upset. I had a Hystorectomy in August and since then have gotten severly worse. They thought I was anemic at first, but they tested and I was fine, they suspected my Thyroid was too low by the tests though so they put me on medication which hasn't really taken away the majority of my symptoms.

Anyway long story short... My son has Celiac and was diagnosed 2 1/2 years ago. We know either myself or my husband is a carrier and could develope it but I have been tested in the past *by blood* and was negative. With feeling so bad and not getting answers from my dr's I started looking into it and was reading that it could cause all the symptoms I am having even the Thyroid problems. So a week ago I got sick of getting the run around from my Dr's and put myself on a Gluten Free diet to try it out. Within 24 hours I had tons of energy that I didn't normally have! As the days have gone on my energy has increased. I am still tired as I am not sleeping well at night, but I have lots of energy and am getting things done around the house now... I am still forgetful, but my stomach problems started to improve after a few days... I don't really know if this is coincidence or the diet though, but I figured I would keep it up another week or so then challenge and see what happened.

Then yesterday we went to Bowling and ate at the bowling alley! My son has been eating there for a year and never actually complained that it caused him any problems so I just ordered what I always get him. By the middle of the 2nd game I was feeling sick and nausiated. All today my stomach has been very upset and I have felt nausiated. I don't have the energy level today and am just irritable and feeling horrible!

I am wondering if I could have been glutened by cross contamination at the bowling ally and that is what caused me to feel this bad? I am not sure if I would have a reaction like this after only 1 week on the gluten-free diet though. I did ask my son if his stomach ever hurts after eating there and he said yes, and I asked if he noticed that any food caused it and he said the french fries and sometimes the chips *nachos*. Well the fries are fried in a common oil so there is a chance of cross contamination but since he had never mentioned this on his own I never thought it was a problem. Now I am thinking it might be!!!

Am I totally parinoid or could I be onto something here? I have an appointment with my Dr tomorrow morning and was thinking of bringing this up and asking about being retested for Celiac because of these symptoms and how after 1 week on a gluten-free diet I started feeling better... But I don't want to come across as totally crazy. I'm just sick of being sick and desperatly want an answer!

Any advice would be greatly appreciated. Thank you!

Rebecca

[Guhlia]

It definitely sounds like you have a problem with gluten. Since you've already been mostly gluten free it's likely that if you got tested it would turn up negative, whether you have Celiac Disease or not... You already know that gluten is a problem for you, stick with the diet. OR... You could try Enterolab testing. You don't need to be actively eating gluten for the stool tests.

Please don't take this the wrong way, but if your son is even getting a minute amount of gluten, he is likely harming his intestines. Damage that is caused now could end up being irrepareable and cause him problems for the rest of his life. I'm not trying to scare you, but he really, really needs to be more careful. Cross contamination is very serious when you have celiac disease. He may not always get a stomach ache, but if he is consuming small amounts of gluten, he is hurting his body. Please, please be careful and make sure he understands this.

[rgeelan]

Thanks Angie... We normally try to be very careful and even the girls that work at the bowling alley are helpful and careful when preparing our food. I have read all the packaging and they let me know if any of their products change or anything like that. They get the hotdogs strait from the back and wrap them in a paper towel and microwave them, so they have never been near the hotdog thing with the bun tray in it... They always make us fresh fries without any other food fried with them also. But the fries are still in a common oil so I wonder if they could pick something up. That has been the only iffy thing that I could think of but he never mentioned that they made him feel sick *till I asked directly!* so I thought they were ok... Now I am thinking I may have found the reason to his last totally random and unexplainable attack... No more fries for us...

I did eat fairly gluten free before going on the diet because I cook our main meals gluten-free, but I still would have some sort of gluten food daily till this diet. I wonder if that could have been just enough to keep my blood from testing positive though? I have had to give up my snack foods and treats and it has been a little hard to change my eating after 28 years, but I was feeling so good till today that it kept motivating me to keep up the diet! Today I am feeling horrible and I don't have the energy or desire to cook. I'm almost tempted to just eat a ton of gluten at dinner time and see if it really makes me sick. Not that I want to feel any worse, but I just want to make sure it isn't all a coincidence, you know??? I hate the thought of having to give it all up, but at the same time if there is a chance I have celiac I don't want to risk the damage it can cause just to be able to grab a quick easy snack when I want one... Unfortunatly I think without a positive medical diagnosis our dr and insurance won't consider it a posibility... I know it was a PITA getting it 'official' for my DS even though his first blood test was highly positive and the Dr really had no doubt, he had to have the biopsy and a repeat blood test for insurance and his medical file...

[Guhlia]

I know exactly how you feel... My daughter is 100% gluten free with no diagnosis. She's actually had no testing whatsoever. I just feel as though it's more important for me to keep her gluten free than it is to have the convenience of gluten. Plus, I'm so sensitive that our house has to be gluten free anyway. Every time she ate gluten or played with Play-Doh I would end up getting sick, so it's just not worth it to me. Plus, she was beginning to show mild symptoms.

As for snack foods, there are many gluten free quick snacks, many that are inexpensive as the glutenous stuff. Fresh fruit, gluten free nuts, baby carrots with ranch dressing, Gibbles or Utz potato chips, Glutano or Ener-G pretzels, Kraft string cheese, some Jell-O pudding cups, Kozy Shack rice pudding... The list goes on and on. Being gluten free, once you get used to it, it pretty simple and the foods will appeal to you more and more the longer you've been gluten free.

[rgeelan]

I have a lot of gluten-free 'snack' foods for my kids but just am being stubborn about giving up MY foods. lol! I think unfortunatly it is going to come down to our entire house being gluten-free eventually. My girls GI wants me to wait till after their next biopsy to put them gluten-free. Their first biopsy showed some possibility of food intollerance though so she said it could be an early sign of celiac for them... My DH may not be happy if I stop buying any gluten foods but I think he will survive and it will be easier for us to stay gluten-free. I know I had to pack all the gluten snack foods in a plastic tote and put it in the garage just to remove the temptation for me. lol! It did make it easier without them around though.

I was looking at the Enterolab site... I will have to ask my Dr if she knows anything about them and if our insurance would reimburse for it. It might be worth doing it on all of us if they would but we just don't have that kind of money if it all had to come out of pocket...

[Ursa Major]

Rebecca, I doubt that the results you had with the diet, and getting sick at the bowling alley are a fluke at all. I truly believe you need to be gluten-free, as well as your girls. If they had ANY inflammation of the bowels, they need to be gluten-free! For your doctor to say they should eat gluten until their villi are completely destroyed is very irresponsible. They have enough symptoms now to warrant an immediate gluten-free diet, before they get even sicker. In young children the tests are highly unreliable, and often result in false negatives. The best test with little kids is to try the diet. If it works, you have your answer. No doctor needed to 'allow' you to put them on a gluten-free diet, it's your choice, as it's a healthy diet.

It sounds to me like the sooner you make your whole house gluten-free, the better.

[Guhlia]

I totally agree with Ursula about your girls...

[rgeelan]

Ursula... They didn't have damage to their intestines, but they did have lukeocytes in their intestines which the GI said is a sign of intollerance and could be the first sign of celiac for them... However we have put them on the gluten-free diet in the past but it hasn't changed their symptoms which is why the GI said to wait till their next scope. Part of their problems improved when we figured out the lactose/dairy issues. But I am honestly suspecting that the lactose and dairy problems could just be early symptoms of celiac...

I saw my Dr this morning and went over all of it with her and she seriously thinks I need to go gluten-free from this point on. The part of my thyroid that was low is now normal however my total thyroid is shutting down so she said upping the medicine would be bad and probably not help with how I am feeling anyway! She wants to see me back in a month and is hopefull that after a full month of being gluten-free that more than just my energy level will have improved!

Last night I cheated since I already felt sick and we went to Olive Garden... I ate all my pasta and have felt horrible ever since then. I am totally nausiated and keep getting stomach cramps and my energy is plumited today! So again this morning I started back on the gluten-free diet in desperate hope that I will start to feel better again in a few days.

I talked to my insurance about the Entrolab tests and was told that they would not be covered and I probaly wouldn't even get a partial reimbursement for them... I still am strongly considering doing them, but have to find the money for them which is kind of non existant right now... I am considering asking my mom if I can borrow the money from her, but I don't want to put her in a bad place financially either... I just think it would be good to have some testing done also. My husband said we should probably have all of us tested, but that's 5 people at $369 each and we really can't afford that. lol!

Thank you for all your advice and concern. I think our house is going gluten-free from this point on....