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4 Months Gluten-Free - No Improvement - Need Help!
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Hi, sorry for the long post, please bare with me, I need some advice!

I had negetive blood tests for celiac, but it runs in my family and I have malabsorption problems (undigested food), hormone imbalances, anxiety, migraines, severe hypoglycemia and digestive issues that all screamed celiac or gluten intolerance to my doctor. I have been STRICT gluten-free and DF for 4 months, and also nightshade free (with exceptions of occasional seasoning). I am also soy free. Things got better after about two months, my digestion was better and I went through an awful detox or withdrawal for about two weeks (could hardly stand, dizzy, fatigued, etc). This was promising that I was on the right track, but things started to go back downhill and never came back up. I had my thyroid checked and had small amounts of antibodies, but no thyroid hormone imbalances. I had saliva tests for adrenals and have low cortisol in the morning and high adrenaline. My doctor suggested Isocort for adrenal fatigue but it made me nauseus and my doc told me to go off it but will not prescribe hydrocortisone or anything else. She says its too intense for me and that my adrenal tests do not look THAT bad. With food, I can't tell if gluten or dairy or anything immediately affects me, I have done tons of elimination diets that didn't tell me anything, but never totally grain free (i'm thinking this might be my next move).

I don't know what to do, I still have all of my symptoms: severe reactive hypoglycemia, anxiety, inflammed mucus membranes (everywhere: stomach, sinuses, bladder, etc), chronic swollen glands, undigested food in stools, tense painful muscles, bone pain, migraines, fatigue, muscle weakness, I could go on and on.

Here are my questions: have I not waited long enough for the gluten-free diet to work it's wonders? I thought I would at least be seeing some sort of improvement in symptoms by now.

I eat a LOT of rice and "gluten-free" products, should I avoid these? Should I go completely grain free?

I started to eat some dairy again after 4 months of elimination, with no change in symptoms, should I continue eating dairy?

I thought at one point that oxalates might be bthering me, but with my other food allergies this is way to hard to deal with, plus I guess I'm in denial about some of this...can such healthy foods be so terrible for you?

I can't seem to find a doctor that can help me figure anything out and I'm so sick of trying a ton of crazy new things.

Thanks for any insight...t

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I can tell you from my experience...I am 5 months gluten free, I found last month that I am definitly lactose intolerant too.

Have you been eating oats? Those cause problems for some people.

There are definitly some gluten free things that bother me I have found, like Honey Nut Chex for some reason.

My suggestion would be to just eat the same foods for awhile, tahts what I have been doing and it has worked, try eating the same thing for breakfast everyday for 1-2 weeks...see how you feel.

I have no idea about the thyroid stuff (I just had mine tested because I am so tired still), but you may want to go see an endrocronologist.

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It is not unusual to have problems with so-called gluten-free processed foods, because they contain starches that your body is probably not used to digesting. They can also contain low doses of gluten (under 20 ppm, but if you eat a lot of them in a day those 20's start adding up - the gluten dosage is cumulative :o ). I would recommend eliminating all processed foods and just eating whole fresh foods - meat, fish, eggs, vegetables, fruit, nuts, seeds. Some occasional (very) rice, Tinkyada pasta, Udi's bread, but try to get most of your carbs from starchy vegetables. You can do this without potatoes - things like sweet potato, parsnips, squashes, beans and lentils. Experiment with things like turnips, rutabagas, taro root, jimama. Yes, it's more work than out of the box, but if it helps you feel better it will be worth it.

I did not suggest corn, as that could be an additional thing you might have to eliminate - I know I did. My reaction to corn is almost identical to the gluten reaction (and unfortunately it is in almost as many processed things as gluten and soy are :( ). Another reason to abandon processed for now so you can control what you are eating; that way you have more chance of seeing what you are reacting to. :)

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Yes, seemingly healthy foods can make you really sick if it's not the right food for YOU. I started getting worsening migraines on the seemingly ultra-healthy GAPS diet. I suspect that I was getting too much natural MSG in the bone broths and homemade sauerkraut. I reacted to tomatoes and suspected nightshade sensitivity... until I learned that tomato sauce is high in natural MSG. Your story makes me wonder not only about oxalates but other food chemical intolerance. The intolerances tend to cluster and if you have one you may have others. Have a go at these two websites.

http://fedup.com.au/

http://failsafediet.wordpress.com/

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I am still really new to this but I've been eating the same thing pretty much every day after a weird oral reaction to gluten free sauce. I think that has helped my body a lot the last week. I have salad, rice and beans coming out of my ears but I'm starting to feel pretty good. :)

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I recommend a simple produce and meat diet to start. Keep a food/symptom journal. Keep it very simple at first so that you can tell what bothers you. Eliminate grains and major allergens. Then you can try one new thing per week. It takes discipline at first, but before long you will have a good diet.

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I'm 4mo into gluten-free diet and also blood test negative. I didn't find I really started to feel better more often (still have off days) until I found the right dose of the right kinds of vitamins/minerals to promote some healing. I'm taking 500mg magnesium (chelated and plain...no calcium as this competes with mag), 2000mg D3, and 100mg B12. The magnesium has really helped reduce the incidents of headaches (I was waking up with a daily headache behind my eyes and traveling down the back of my neck) and the D3 has helped with fatigue and muscle aches. I had started at 1000mg of D3 but didn't get noticeable improvement until I upped to 2000mg and my D levels actually tested solidly in the normal range even before supplementing w/ 1000mg.

I have also made sure that I'm getting adequate protein at every meal cause if I'm low on that then the empty calories just aren't enough to give me energy for the day.

Stick with it. The others have offered great advice.

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Dude you sound exactly like me.

I've been gluten free for about 4 months (since October 20th 2011) and I have had some improvement but I still don't feel myself.

Before going gluten-free, I had moderate to serious adrenal fatigue, undigested foods, eczema, chest pain, gas, crippling anxiety, pathogentic bacterial overgrowth in my gut, yeast infection, swollen lymph nodes, swollen glands (nose, throat, ears).

After going gluten-free, test showed my adrenal fatigue had completely healed, paothgenic gut bacteria and yeast were gone, eczema is much better, anxiety is about 50% better, swollen throat and nose glands are gone. The test also showed some hormonal imbalances.

The point of this is to give it time. You also need to eliminate that gluten free processed food stuff. That just makes my eczema explode as well as some other symptoms. Skylark is also right in saying to stay away from starchy foods like potatoes and rice.

I'll be checking in on this thread.

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    • I eat them with no issues and know several other Celiacs that eat them with no issue.
    • I am sorry that you are sick! i think you need to really adhere to a gluten free diet that consists of ONLY whole foods (no processed gluten-free foods) and do not go out to eat, until you start to see improvement.  Each tiny gluten exposure can set you back.  It sounds like you really became even more ill after the gluten challenge.   I was just anemic when diagnosed.  I waited seven weeks for my endoscopy due to work issues, so i took the time to consume lots of gluten.  Like a loaf of sourdough per day not to mention all the cakes, cookies that I loved.  (Okay, I just ate a few out of each package......)  by the end of seven weeks, I knew I had celiac disease.  I had a bloated stomach visible under my left rib cage, pinching when I bent over, indigestion, etc.  Not to mention some weird Fibro pain my my shoulders, tingly legs, etc.   Most resolved, but it took about two years. If you  ask for thyroid panel, be sure it includes testing for thyroid antibodies.   
    • My daughter, who is almost 21 and has celiac disease, was diagnosed with Epilepsy a year ago. Hindsight being 20/20, we realized she had been having seizure since she was a teenager but the random passing out and feelings of being 'out of it' were attributed to dehydration or poor nutrition and sleep habits during numerous trips to the emergency room. In our reading about Epilepsy, I have found some mention of celiac and gluten issue connections and even where a strict adherence to a gluten-free diet provided a lot of improve the with frequency and severity of seizures.  I would be interested to know if anyone else shares this experience.
    • I have also reacted to various Planters products, believing them to be safe because gluten is not listed in the allergens but have had almost identical reactions to yours.  It did not occur to me that I might be getting zapped from them until just recently when I ate some of their Salt and Vinegar almonds and became really ill and then recognized that I had reacted to them before. I have notice in the past few months that the 'Hermans' brand nuts, which have never mentioned wheat in their allergens now carries the 'processed in a plant that processes wheat' disclaimer.  It makes me wonder if all nuts are processed in the same manner and if all nuts and nut products should be considered unsafe? I know that I will not trust the Planters brand any longer regardless of whether wheat is listed or not.
    • I've heard some people say that they're gluten free, and some say they're not.. I had a container of planter's cashews that I ate a few days ago and I haven't been feeling that great since then. I thought I was fine, but yesterday I woke up with a headache and was feeling really gassy all day. Then since last night, every once in a while I'll have some stomach cramps. They last for a few minutes and then go away.. that has happened 3 or 4 times since last night. It seems weird that I wouldn't have a reaction right away though.. or at least within a few hours of eating them. I ate some on thursday and on friday, and I didn't really start to feel sick until saturday. It's been a while since I last got glutened though, so maybe my reaction has changed? Or maybe I'm being paranoid and I just ate too many cashews haha. But that's the only thing I've eaten in the past like 2 weeks that was different. Has anyone else had a problem with planter's nuts?
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