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Sick For 23 Years And Wondering About Gluten
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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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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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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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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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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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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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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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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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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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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
    • This 4 out of 5 criteria does not apply to children. I was never given a reason why, but it isn't.     That said, you may try to get a second opinion from another GI who may be willing to give her a firm dx.  We were in your boat 6 years ago and while I'm sure I'll get slammed for it, I wish we had kept gluten in our kiddos diet till he scoped positive for a variety of reasons.  Again, even family is different and you have to find what is best for you!
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