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Downhill Spiral

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Ok let me start by saying this will be a vent session!!! But please help...

Diag'd w/ Celiac Feb 06, accepted this in August 06 and thus my totally gluten free diet began. My vitamin levels are getting better, great right... BUT NOW my immune system is all over the place, I am breaking out in hives, my face swells and there is a choking cough which leaves me to gasping for air, so in a mad dash I grab my inhalor. After this 30 - 40 minute attack, I am physically exhausted, I have even passed out on the kitchen floor.

So my doctor thinks I have allergies to other grains. "YOU HAVE GOT TO BE KIDDING ME". He wants to take away corn, rice and potato. Now what is a girl to do. I love my meats fruits and vegetables, but come on, I needs some junk food every now & then or a baked potato, I just found these rice thai noodles "my saving grace away from pasta".

If he even mentions the words "no dairy" we are gonna fight.

Tomorrow I go for an allergy test to find out more. But I have a bad feeling my doctor is right. This weekend I cut out the above items and I felt much better, my allergy symptoms really lifted. I still hope maybe it is just one, like the potato - I could live without that. But corn and rice that will be hard.

Now I hear about these people on the paleo diet, so I read a little about it... No salt, no sugar, no beans, no soy, no wheat, no corn, no potato, no rice... this list goes on. Anyone following this diet??? & How???

Is anyone else, allergic to all grains??? How do you deal with it???

Diag'd w/ Celiac - Feb 2006

Diag'd w/ 5 Vitamin Deficiencies - Feb 2006 (B12, D, Calcium, Potassium, Magnesium)

Diag'd w/ Endometriosis - May 2004

Diag'd w/ Hypothyroidism - Oct 2002

Diag'd w/ Polycystic Syndrome - 1998

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I am not allergic to all grains, but I had to answer anyway. It is entirely possible that you will be able to re-introduce rice, potatoes, etc at a later date and just need to take emergency precautions at this time.

I was down to about 5 foods when I started this, but now there are plenty of foods I can eat.

BTW, your taste buds will change once you have been away from those grains and you won't even be interested anymore. :)


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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i'm thinking the same thing as marcia----you may eventually be able to add some of these things back.


15 year old twins with celiac, diagnosed dec. 2005

11 year old daughter with celiac diagnosed dec 2005

17 year old son with celiac gene

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Right now I eat only meat, chicken, fish, eggs, veggies, and a little potatoes and rice. I can have no more than one piece of fruit per day. I have no sugar, caffeine, alcohol, dairy, gluten, corn, or soy. I eat 5 small meals per day.

I am seeing an MD who also practices alternative care and she said I was just so run down from stress and constant inflammation that I need more than just a gluten-free diet to start feeling better. Eventually I'll let myself have treats, but probably only once or twice a week ... I don't want to feel bad again ... I'm only now starting to feel better and have a long way to go.

So, though I'm not on the diet you mentioned, mine is as resticted ... how do I deal with it? I eat at home, I prepare all my own meals, I'll eat before we go somewhere and bring food with me. I spend so much time eating, shopping for my food, etc. that I don't really have time to think about all the foods I'm missing out on. Plus, the stuff I'm treating myself to is so tasty, how can I complain? I'm just doing what I have to do to get better.

I'm glad you're starting to feel better. You're not alone, there are others of us who have had to make things more simple in the beginning.

gluten-free 12/05

diagnosed with Lyme Disease 12/06

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Hi--A lot depends on whether you are truly *allergic* to these foods, or intolerant.

The first step is to see the allergist and have the allergy testing--that's what I did and I was not allergic to any of the foods he tested for. Your reactions sound like they could be from a true allergy, so I'm glad you're getting tested for those.

If you are negative, but find the foods still bother you, you are probably intolerant. You'll need to avoid the offending foods for at least 6 months or even longer. At that point, you could (if you want) try the food again and see how it goes. It's possible for a food *intolerance* to go away with time, as as your intestine heals.

Through an elimination diet (as suggested by my allergist), I found that I'm intolerant to dairy, all legumes (soy, peanuts, beans, peas, green/wax beans, etc.), corn, and coconut--pretty much all forms of plant protein. My diet consists of meats, veggies, fresh fruits, potatoes, olive oil, almonds, spring water and a small amount of dark chocolate.


"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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It does get better. I avoid most of that and they are right, your taste buds change and you don't miss those foods the longer you avoid them. I occasionally treat myself like Carla and wow, do I really enjoy that but most of the time, I am fine.

I eat out occasionally but at very select places that are used to dealing with me. Most of the time, 99.5%, I cook and eat at home.


gluten-free since July 2004

Other Intolerances:

Strawberries and Banannas (2007)

Nitrates (April 2006)

Yeast (which includes all vinegar so no condiments) (Oct. 2004)

Peanuts (Nov. 2004)

Soy (Oct. 2004)

Almonds (Sept. 2004)

Corn (Sept. 2004)

Lactose/Casein (1999)

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