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4 Months Gluten-Free - No Improvement - Need Help!

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Posted 08 March 2012 - 10:12 AM

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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Basic bloodwork for celiac came back negative. No biopsy done.
Went gluten and dairy free November 7, 2011. Trying to figure this out myself...will update when/if I see results from gluten-free/DF diet!

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Posted 08 March 2012 - 10:33 AM

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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Posted 08 March 2012 - 11:20 AM

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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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson


Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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Posted 08 March 2012 - 12:27 PM

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.

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Posted 08 March 2012 - 12:50 PM

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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Dairy free since 2010
Gluten free 2/2012 after off the charts positive blood test
Soy and MSG sensitive
Have opted not to biopsy right now.

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Posted 09 March 2012 - 05:03 AM

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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Posted 09 March 2012 - 05:48 AM

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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Diagnosed NCGS April 2012 after battling headaches, canker sores, bloating, heartburn, epigastric pain, buzzed feeling, extreme fatigue, muscle aches, and nausea since November 2010.

gluten-free since November 2011



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Posted 15 March 2012 - 08:59 AM

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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