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Sick For 23 Years And Wondering About Gluten


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8 replies to this topic

#1 jackibar

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Posted 25 November 2012 - 01:26 PM

Hi, everyone...

I just found your forums (and site) today when doing a search on "shortness of breath after eating" to see what came up. Brief summary of my situation... I'm now 52 years old and have been sick to the point of being disabled since Nov. 1989. My first symptoms were dizziness and severe fatigue and weakness. It got so bad that for 6 years I had to use a special high-back wheelchair just to go anywhere because I was too dizzy and too weak to walk or even hold my head up (had "jelly legs). Was diagnosed in 1991 with Chronic Fatigue Syndrome. After that, over the years, was diagnosed with lupus, fibromyalgia, environmental illness (Multiple Chemical Sensitivity), and Type II diabetes. In 1996 we started avoiding chemicals like perfumes and cleaning products and my dizziness and weakness improved to the point I was able to forego the wheelchair. Still exhausted most of the time, though.

Also have had a weight problem since age 7 which has now turned into morbid obesity (325 lbs., 5'4"). No matter what I do, my weight won't drop. Thyroid tests come back normal, but my thyroid is NOT optimized (I'm on meds) - still have all the hypo symptoms - major hair loss, dry skin, fatigue, weight gain, fluid retention... Finally in 2010 I went to a Lyme Specialist and using the right tests and the right labs (there are only a few in the country) I tested positive - had tested negative many times before. So I've been undergoing Lyme treatment - but with only minimal improvement.

Earlier this year I started having really bad fluid retention in my legs, shortness of breath, and chest pains. Went through every cardiac test but all was normal. Have been on lasix to keep the fluid down. But a few weeks ago, it seemed the lasix quit working. Swelling in my legs, joint pain, severe tendonitis in both knees and hands, shortness of breath, and dizziness all got worse. Had an EKG which was fine. I started noticing my "episodes" of rapid heart rate (heart pounding and racing) and shortness of breath seem to happen after meals - usually in the evenings, but not always. This got me to wondering today whether it could be food allergy related (or sensitivity). Which led me to your forums.

I've been just barely skimming the posts but it sure seems this might be what I'm dealing with. My Lyme doctor did suggest I look into going gluten free a while back, but I hadn't done so yet. Just feel SO bad all the time - can barely function, feel "half-dead"... But if there's a chance that this is the REAL culprit - and that I really COULD feel better - ???!!! - then I need to find out! I have been tested for celiac over the years by a couple of my doctors (one is a Naturopath) - but it always came back negative. Also had endoscopies for stomach pain attacks which I thought might be gall bladder but it just showed "gastritis" and a hiatal hernia. So I'm thinking that if I AM having problems with gluten, it is probably an intolerance rather than true celiac - ?

Anyway, I'm really thinking I need to see what happens if I go gluten-free. If this is my problem, how long would it usually take to notice a difference in how I feel? Would a week be enough to tell anything? I'm thinking of trying to make a big pot of vegetable soup or something that's simple but that I like and that wouldn't have gluten. And maybe during the week supplement this with baked potatoes/broccoli while I'm learning how to really do this... Would this work ok?

Does this sound like it might be my problem?! Are there any good, basic books y'all would recommend for someone like me to learn more about this and the best way to get started? Thanks so much for any help or thoughts... I'm terrified - but sorta feeling excited like maybe there IS a chance I will get my life back after all. I'd about given up hope.

- Jacki
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#2 shadowicewolf

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Posted 25 November 2012 - 02:05 PM

Before you start, can you get your doctor to run a full celiac blood test? If you want an official diagnosis, you must still be eating gluten for the results to be accurate. This includes the blood tests and an endoscopy to biopsy a portion of the small intestine (which has a name that i can't remember right now). There is also a genetic test that can be ran that can help with diagnosis.

At any rate, gluten free is somewhat difficult at first; no wheat, rye, or barely allowed. You will go through a withdrawl peroid (which can include but not limited to random mood swings, breaking down at the sight of gluten-y food, and cravings :lol: ). It is sometimes used in medications as a starch binder, so you would have to contact the medical company that produces it. Many kitchen wear things should be replaced such as the pasta strainer, wooden utencils, plastic utencils, scratched pans and tupperwear.

Oats are generelly crosscontaminated and should not be eaten without the "gluten free" label on the package (i believe its because they rotate the fields with wheat and oats). Toothpaste too may have it in it.
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#3 dotchianni

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Posted 25 November 2012 - 02:53 PM

Gosh, this sounds a lot like me, symptoms wise. I was told I was going to die if I didn't do something to lose the weight, get some nurishment in me (I couldn't eat) and reverse my fatty liver. I was terrified. Luckily I found a dietitian who knew what she was doing! She ran an MRT test and we got the results back. I stuck religiously to the diet. After 24 hours of not eating at all, I had my appetite back with a vengence. BUT I still had horrible abdominal pains and nausea and cold sweats, fatigue (like sleeping 20 hours a day! Not even kidding there), jelly legs, etc everytime I had a day that I ate spelt bread. So I stopped eating that. Then I read about gluten and celiac and I removed ALL gluten from my diet.

My next appointment, I told the dietitian about how I feel like a new person. My weight was dropping so fast that she threatened to put me in the hospital... she didn't, but I couldn't help it. I could out-eat my 2 teenage sons, which was a miracle since I couldn't eat before (Okay, I could eat about 500 calories a day before agony and fatigue set in) But I also told her about the spelt and gluten research. She strongly believes that I have celiac sprue. But since I was not willing to eat gluten before the gluten testing, we decided to let the testing go. She said that I could get a false negative if I avoid gluten. So I decided to just stick with gluten free. Every now and then I have an accidental cross contamination and I SUFFER because of it. I shake and sweat from the pain. So you can guess how often I eat out LOL. I MAKE SURE I make my own food or bring my food with me.

I am just over two years gluten-free and I am very happy with it. I feel like I am me! I am also VERY happy to be able to eat again. Sure, every now and then I miss my pasta or my grilled cheese sandwiches. But I don't miss them enough to go through the agony I went through before. That wasn't living. I have a new motto I repeat when the missing food gets bad...

I eat to live so I can live to eat.
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#4 jackibar

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Posted 25 November 2012 - 06:49 PM

Thanks for the replies... I'm going to call my dr tomorrow and ask her to add the full celiac panel to my labs I'm about to have done. Will this be enough info to get the right tests or do I need to ask for more specific ones?
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#5 GottaSki

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Posted 25 November 2012 - 08:24 PM

Welcome Jackibar and Dot!

Dot -- thank you for sharing your story - what a gift that you have found a path to a healthy life and that you are willing to share it :)

Jacki -- you should be specific that you would like a full celiac panel consisting of:

Total Serum IgA
tTG (Tissue Transglutaminase) - IgA and IgG
DGP (Deamidated Gliadin Peptide) - IgA and IgG
EMA - IgA

If nutrient testing is not already on your orders:

CBC - Complete Blood Count
CMP - Complete Metabolic Panel
Vitamins - All Bs, D, K
Minerals - Iron, Ferritin, Copper, Zinc

I think you said you might have had Thyroid tests, but make sure you have had more than TSH. The Thyroid Stimulating Hormone is actually a pituitary hormone. Because Celiac Disease and Autoimmune Thyroid Disease go hand and hand you need to get an accurate picture of thyroid function:

Free T3
Free T4
Thyroid Antibody testing

Hang in there...wait for the blood test results -- meanwhile read as much as you can to prepare to remove ALL gluten from your diet for at least three months (six would be better).

Ask as many questions as you'd like -- many of us have gone through years of mysterious illness with a multitude of "normal" blood work. Often it is a matter of not yet having the correct tests.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 jackibar

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Posted 26 November 2012 - 12:44 PM

I'm getting my labs done tomorrow! Just wondering if it would be a good idea to eat something with gluten right before going for the test? If so, what would be a good example?
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#7 GottaSki

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Posted 26 November 2012 - 01:09 PM

Have you been ingesting gluten regularly? One day of gluten loading won't effect your blood work. The tests measure antibodies created in response to gluten - this reaction doesn't happen in one day.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#8 jackibar

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Posted 26 November 2012 - 01:35 PM

Yes, I only found out yesterday that I may be dealing with gluten problems, so I haven't made any changes yet. Bread is my middle name :(

Just wondered if eating gluten right before going for the test would help trigger the antibodies to avoid a false negative...?
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#9 GottaSki

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Posted 26 November 2012 - 01:41 PM

As long as you have been eating gluten - at least a slice or two of glutenous bread per day or the equivalent - your test results should be as accurate as they are going to get.

You might want to make a gluten bucket list and eat some of those items until you find out your results/decide all testing is complete.
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)



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