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walshclan

Tested Negative For Celiac's

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Hi:

I am just about out of options. Here is a summary of what's been happening to me:

1. I've had diarrhea just about every day since I can remember. Many times I do not make it to the washroom. I have never been able to go for walks outside because that would just be asking for it.

2. I am just about 40 and currently having overwhelming fatigue (I sleep 17 hours a day) and nausea.

3. I was diagnosed with bipolar disorder about 8 years ago and it was very difficult.

4. Last February I went to a naturopath that did a VEGA test. He said I was intolerant to a bunch of foods. Wheat, yeast, soy, dairy, meat/tomato combinations, meat/potato combinations, spinach, turnips, chocolate, tea, coffee, and msg.

5. After getting off all that wonderful food, my bipolar went away. I no longer had the ups and downs. I used to explain it that the diarrhea went away but if I screwed up even a little bit it came back.

6. In the summer I started having major fatigue and nausea.

7. In september/october time frame I took a remedy for yeast problems and my nausea went away.

8. In november the fatigue lifted and I was fine for 2 months.

9. In January I helped a friend move. It was a very stressful situation as there had been abuse and the next day I started with the fatigue again.

10. I have been cheating on my diet since about september. I have probably been not been extremely perfect about my diet since a couple months after I started. (try to ignore the following rant)I try to do the right thing, but I am so tired of not being able to eat anything. Soy is in almost every processed food. I hate cooking and everything I eat needs to be made special. The bread that I can have tastes like yuck. I can never have sweets. Every night for dinner we have a meat, rice and vegetable. Nothing with a sauce. None of the foods that make me go YUMM.

11. I have not had diarrhea badly since last february. But it used to be in February/March that when I had bad foods I would be very sick. I no longer feel the huge pain whenever I have a bad food (which tells me that I am cheating way too much and my body is back to the way it was).

12. In november I went for a endoscopy and on the way down they did a celiac's biopsy which was negative. But I'd been off wheat for 8-9 months (mostly)

There is a lot of information here, I'm sorry. If anyone can help, I'd sure appreciate it. What I'm looking for is a course of action to see whether I actually have celiac's, and an idea whether the bad stuff in my diet is causing the nausea and fatigue.

Thanks so much,

Connie

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Hi Connie,

If you would like to be tested for Celiac, you should continue to eat gluten. Cheating since September will certainly help in this situation.

Here is the blood test that you should request from your doctor:

Anti-gliadin antibodies (AGA) both IgA and IgG

Anti-endomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

This may be the start to continued good health for you.

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I would also have your thyroid checked out. Make sure they do Free T-3 too.......And the test for lyme too... If insurance will pay I would get a DNA test done to see if you carry the genes or the gluten intolerant gene....

Cheating is the worse thing anyone can do in my book, it just causes additional baggage when one is already having a full plate of illness......

mamaw

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I've had the thyroid test. I'm okay with thyroid. I live in Northern-Eastern Ontario and there are only 3 cases of lyme disease in my area a year. I seem to match some of the symptoms but I don't remember a bulls-eye bite.

I don't think I'm going to try going back on gluten. That would just suck.

Thanks

Connie

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If you don't want to go back on gluten, then that already tells you something. It means that you know you don't feel well with it. That means that you should try to be 100% strict with your diet, because you know you will feel better that way. If I were you I would also try being 100% gluten free and not just wheat free, that might just be the last little missing piece of the puzzle.

If you find it difficult to find yummy food to eat, this board is a wonderful resource, there are several members who have multiple food restrictions so I'm sure you can get lots of ideas. Also if you need help with staying motivated, please hang around, there are lots of supportive people here to kick your butt! :D

Pauliina

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If you feel completely better when you are avoiding allergens, I'd say they are the problem. If you do not, I would keep looking for what else might be wrong and even be causing your food intolerances.

Lyme Disease is one thing to look at ... it ended up being my problem. Here's a thread on it. http://www.glutenfreeforum.com/index.php?showtopic=36163 The nature of Lyme Disease is that it gets worse, then better, just as you are saying (sometimes it just stays "bad"). It also is made worse by stress.

Also, heavy metal toxicity, bacterial dysbiosis, or other things could be wrong. Many times with chronic illness, it's not *just* one issue that is a problem. I had all three issues I've suggested.

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This seems similar to my condition. I'm 38 and have been in denial for years. Even though the condition runs in my family i thought it couldn't affect me. I just didn't want to give up Beer, bread etc. So I suffered the consequences and got to the stage where I practically needed my own toilet at home and work.

My tests came through today, and whilst they seem inconclusive i have an understanding doctor who believes that i am intollerant to gluten and should stay on a restricted diet for 6 months at least and see what happens. Biopsys etc might be needed in the future, but if my condition improves (and it is doing) then the proof is in the (gluten free) pudding!

To be fair, i can understand the worry, and the thought of missing out on many nice foods and drinks (no more Guinness!) but in many ways i am starting to feel good about this. I have suffered from multiple lipomas all over my body for years and learned to live with that, so i'll have to learn to live with food intollerances. I'm feeling the best i have done for years when i'm on the restricted diet. i keep a food diary to see if anything is catching me out (and it has done a few times over the last few weeks!). The supermarkets seem to be well stocked up with alternatives, so life goes on.

There's many worse things to suffer from in life, so try to look on the bright side. keep smiling.

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Thanks Salamandar:

That was really uplifting. I have been back on the restrictive diet. My hubby and I have come to an agreement. I will be spending more money on food in order to keep my problems under control. We are pretty strapped so this is a big priority issue. Since I've started I've screwed up once...m&ms have soy in them I think. Oh yeah, and chocolate.

Take Care,

Connie

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Just wondering if you could go back to ur naturopath and get retested, to see if the same foods are still causing the problems? it might be easier to stick with the diet if 1 or 2 of the foods were back on your list

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Thanks Salamandar:

That was really uplifting. I have been back on the restrictive diet. My hubby and I have come to an agreement. I will be spending more money on food in order to keep my problems under control. We are pretty strapped so this is a big priority issue. Since I've started I've screwed up once...m&ms have soy in them I think. Oh yeah, and chocolate.

Take Care,

Connie

Hi Connie, one thing that may uplift you just a little bit- While gluten-free food is expensive after a year on the diet my DH was doing our taxes and adding up our med expenses. The year before I was finally diagnsoed we spent 17 thousand dollars on copay for doctors, testing and drugs. The year after I was diagnosed we spent less than a thousand and after 5 years we are well under 500 a year in copays. For my family the diet turned out to be much, much cheaper in the long run. I don't know if the situation will be quite as startling in your case but sometimes when we think of how pricey our food is if we step back at look at what we spent prediagnosis on health related stuff it can make us feel a bit better.

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Ravenwoodglass and Dbmamaz:

Actually I live in Canada...no copays. I pay a bit for drugs but that is it. But the health would be worth it. I can't imagine living a whole year sickness free.

I am wondering about the restrictive list but I guess my next call will be to a NAET therapist to use acupunture to get rid of the intolerances. We are saving our pennies for that.

Thanks for everyone's replies. You are a blessing to me.

God Bless,

Connie

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Hi Connie, I am in Ontario, too (about 50 miles north of Toronto).

Wheat, yeast, soy, dairy, meat/tomato combinations, meat/potato combinations, spinach, turnips, chocolate, tea, coffee, and msg.

I had the vega test done about five years ago. It was very accurate, but missed the most important intolerance, namely gluten. I guess that is because at the time I had a delayed reaction to it, and only got really ill three years later, with chronic diarrhea.

Then it showed an intolerance to all nightshade foods, the combination of grain and fruit, lactose, chocolate, tea, coffee, msg (actually EVERYBODY tests positive to the last four, all my kids and grandchildren and son-in-law did, which is interesting).

In the meantime I found that with my combination it was so bad (a systemic reaction with hives everywhere, severe swelling and intolerable itching, as well as general malaise) because I can't tolerate grain or fruits, and the combination is just horrible.

Anyway, you said you eat only rice, meat and vegetables every night, no sauce. That sucks, and is not necessary!

There are some awesome rice pastas out there. Any Zehrs (President's Choice stores, which includes Loblaws) will have several brands, including the President's Choice biological 100% brown rice pasta (my husband's favourite). They seriously don't taste different from regular pasta.

You can make white spaghetti sauce to go with the pasta, since you can't tolerate meat with tomato. That is what I do, since I can't tolerate tomatoes.

I hate cooking, too, so I make enough for more than one meal when I cook. Make double portions of sauces (thickened with light buckwheat flour (my favourite), cornstarch or rice flour (you have to make a thin slurry with those first, and then stir it in, or you'll have lumps) and freeze half for another meal.

Buy yourself a good cookbook (Bette Hagman wrote several fabulous ones). You can substitute when necessary.

You can still be tested with Enterolab. Their tests are accurate up to a year after eliminating gluten. Just beware that if you go that route (which will also tell you your genes) that it will cost you about $450.00, which includes about $85.00 for FedEx shipping. You will have to ship your samples back by overnight courier, that is why it is so expensive.

I had my youngest daughter tested by them, and I am glad I did.

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Hmmmm, that kinda makes sense (that I am intolerant to gluten) but that sucks. Yeah I've tried the pasta route...not terribly fond of it....because I'd be hungry all night because I didn't get protein with my dinner. So last time I added some cranberry goat cheese...mmmm that was good.

God Bless,

Connie

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Connie, why wouldn't you get protein with your dinner if you eat pasta? When I said white sauce, I meant white MEAT sauce, of course! Or you could make a nice pasta salad, and you can put tuna into that.

Pasta casseroles can be great as well.

You can eat potatoes if you eat eggs instead of meat for supper. Who says you can eat eggs only for breakfast? Fried or scrambled eggs with mashed potatoes (you can use rice milk instead of dairy, and olive or coconut oil instead of butter) with vegetables is pretty good.

Or you could eat FISH with your potatoes and veggies! I don't believe the combination intolerance includes fish. My daughter has the same combination intolerances as you, and she never had a problem eating potatoes with fish.

Also, instead of potatoes, you can cook cauliflower and mash it like mashed potatoes (which is what I do sometimes). It really isn't bad, even my husband likes it.

You need to get inventive to get out of that boring rut! You can eat fun foods if you try.

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