How Long Should I Go Gluten-Free?

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How Long Should I Go Gluten-Free?

Postby bluestocking » Thu Apr 16, 2009 1:50 pm

Okay, so I'm grasping at straws. I have a disabling neurological condition called postural orthostatic tachycardia syndrome. I've had it for about 10 years.

I've been McDougalling pretty strictly for about a year. Getting rid of the dairy products solved my lifelong problem with slow-transit constipation. I've even lost a few pounds, so my BMI is now down to 20, which is great because I can't exercise much. But I still have POTS, which is still seriously restricting my activities.

I noticed on a forum for POTS patients that many of the people with POTS have either Ehlers-Danlos syndrome or celiac disease. Since I'm not double-jointed, I asked my doctor if I could be tested for celiac disease. He said that the test is expensive and the results can be misleading, and would probably be negative since I have no intestinal problems. He had no objection to my going gluten-free as an experiment. My question is, how long is long enough for a trial of a gluten-free diet in a situation like this? Or is there no scientific evidence to guide me?
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Re: How Long Should I Go Gluten-Free?

Postby JeffN » Fri Apr 17, 2009 5:42 am

bluestocking wrote:Okay, so I'm grasping at straws. I have a disabling neurological condition called postural orthostatic tachycardia syndrome. I've had it for about 10 years.

I've been McDougalling pretty strictly for about a year. Getting rid of the dairy products solved my lifelong problem with slow-transit constipation. I've even lost a few pounds, so my BMI is now down to 20, which is great because I can't exercise much. But I still have POTS, which is still seriously restricting my activities.

I noticed on a forum for POTS patients that many of the people with POTS have either Ehlers-Danlos syndrome or celiac disease. Since I'm not double-jointed, I asked my doctor if I could be tested for celiac disease. He said that the test is expensive and the results can be misleading, and would probably be negative since I have no intestinal problems. He had no objection to my going gluten-free as an experiment. My question is, how long is long enough for a trial of a gluten-free diet in a situation like this? Or is there no scientific evidence to guide me?


Greetings,

If you truly have celiac disease, than you can be tested for this. People with celiac disease have higher than normal levels of certain autoantibodies in their blood. Therefore, doctors can test your blood for high levels of these antibodies - anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). In addition, a biopsy can be done to confirm the diagnosis.

However, if you are suspecting you may benefit, eliminating gluten should not be too much of an additional step. Wheat, Rye, Barley and Oats are the main sources of gluten in the diet and you can now buy gluten free oats. Rice, corn, quinoa, buckwheat, millet, amaranth, tef, wild rice, and yams, potatoes, sweet potatoes are all gluten free and can become the main base of your intake.

There is no single answer to how long it will take to know. However, for most people who go on an elimination diet, they see relief in 1-14 days.

In Health
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Postby bluestocking » Fri Apr 17, 2009 6:52 am

Thanks! I'll plan for at least two weeks to start with. Then I'll try to figure out how long it would take for my norepinephrine transporters to grow back. That might take some extra time.
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Postby bluestocking » Wed Apr 29, 2009 9:03 am

I've been gluten-free for two weeks. During that time, I've had zero migraines, and only one day of prostration. That's really good, but not definitive. I'm still having bad presyncope when I stand up, and I still can't think properly while I'm on my feet.

To everyone's surprise, I actually woke up this morning feeling like I wanted to go for a walk. The dog was thrilled. I never feel like I want to do any physical activity, especially not in the morning. POTS patients aren't morning people, because that's when the hypovolemia is at its worst. We went for a 2-mile walk. Now I'm waiting to see if I "crash." A doctor who treats a lot of POTS patients once told me that people with POTS don't have normal reuptake of norepinephrine, so if we "push" ourselves by doing something that puts too much of a strain on the sympathetic nervous system, we use up our norepinephrine and end up prostrate. Unfortunately, you can't exercise your way out of a problem like that.

Going gluten-free is far more of an inconvenience than any other dietary intervention I've tried, but I'll stick with it for at least a while longer.
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Bluestocking.

Postby f1jim » Wed Apr 29, 2009 4:15 pm

Good luck with your elimination diet. It looks like there are some hopeful signs. It must be tough dealing with this condition. Just wanted you to know we recognize and acknowledge your struggle.
Hang in there!
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Postby bluestocking » Sun May 03, 2009 9:13 am

Thanks!

It's been almost three weeks, and I seem to be improving a little day by day. I'm allowing myself to hope that I will be freed from my heavy-duty waist-high pressure stockings before the weather gets hot!
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Postby toadfood » Sun May 03, 2009 9:58 am

It's great to hear that you're getting relief from this -- I hope you and your dog have many happy walks together.
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I have to stay with my turtle energy. Slow and steady wins the race. -- Letha
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Postby bluestocking » Wed May 06, 2009 10:40 am

When I took my blood pressure and pulse this morning, it was 92/61 and 72 while lying down and 106/72 and 98 while standing. That's actually astonishingly good for me.

My pulse went up by less than 30 beats per minute, so I don't quite qualify for a diagnosis of POTS today! That's the first time that has happened in years! My diastolic pressure went up by only 11 mm Hg when I stood up! Yeah! My pulse pressure was good, even while I was standing up. Now, I normally feel somewhat better at this time of year, but not this good.
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Fingers still crossed here...

Postby f1jim » Wed May 06, 2009 12:37 pm

But it looks like a nice positive trend.
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Postby bluestocking » Wed Jun 03, 2009 7:28 pm

The positive trend continues. I've been walking around without my waist-high high-compression stockings for a couple of weeks now. I have much less presyncope when I stand up. I haven't had a single migraine.
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Excellent.

Postby f1jim » Wed Jun 03, 2009 7:39 pm

Has the condition improved this much in the past? I know you want to be as positive as possible but it could be part of a cycle? You would know best. Those stockings sound like some sort of cruel punishment.
Good kharma is being sent your way!! Fingers crossed, too.
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Postby Mrs. Doodlepunk » Thu Jun 04, 2009 5:30 am

Hey there, bluestocking. I found this thread and was going to suggest the Biocard test if you wanted an inexpensive test to try, but it's only good to use if you are eating gluten for months. Since you already went gluten-free, it would not be worthwhile to do any testing.

BUT - I am so happy about your positive results with going gluten free! I just love reading about stuff like this. I hope you keep on improving.

Although I've never personally worn compression stockings that were waist high, I have helped people into them, and have worn thigh high ones myself - but only until the spinal anesthetic wore off and I could FEEL them and get up to remove them myself! I can't imagine wearing them in the summer. You must feel free as a bird!
It IS the food! :unibrow:
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Postby bluestocking » Thu Jun 04, 2009 11:33 am

Thanks for the encouragement!

Dang! I wish I'd done my homework instead of wasting my time and a copay at a doctor's visit. I could have just bought the Biocard test by mail! I could have wasted one less copay and avoided yet another pointless and annoying conversation with an unhelpful yet arrogant medical professional.

My condition normally does get somewhat better in the summer, which is why I'm only cautiously optimistic. I think it's because blood volume typically is a bit higher in the summer for normal people, so maybe that's what's helping. Or maybe my vitamin D levels were dropping in the winter, which might have been making the celiac worse, if indeed I do have celiac. Who knows? All I know is that I feel better than I have in years.

The other things that have helped me are things that either directly expand blood volume (salt and water loading and licorice), prevent what little blood I have from pooling in my lower extremities (compression stockings) or compensate for malabsorption (huge doses of thiamine and other B vitamins), which could be due to celiac disease. Ordinary multivitamins didn't help. Thank goodness I could get the big doses at the health food store. They kept me from going on disability. I kept bringing "witnesses" to my doctors' appointments, to tell them what a dramatic effect the thiamine had, but they never seemed to listen or to think that it could have any significance. What does it take to get through to them?

The stockings were a godsend. They improved my vital signs and my mood so much that they really helped me to function. Without them, on bad days I couldn't stand up without being preoccupied with the idea that I wanted to sit or lie down. They are uncomfortable in the summer, though. And some of them crush your toenails and make them hurt as if they're ingrown. I used to cut the toes open until I found a brand that had a loose-fitting toe. They're a bit of a nuisance in the winter, and a major nuisance in the heat of the summer. Plus, the tan ones make you look as if you have robot legs. An acquaintance of mine once did a serious double take and then said, "Oh, you're wearing supp-hose. At first, I thought you had an artificial leg!"
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Postby bluestocking » Wed Jul 29, 2009 3:28 pm

I took an article about celiac disease to my family reunion. My cousin thinks celiac disease could explain why he has osteoporosis and has trouble keeping weight on. He promised me that he would get tested.
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Scientific American

Postby Anne-Marie » Thu Jul 30, 2009 7:57 am

If it is not the same one you are talking about, there is a good article in this month's Scientific American about Celiac Disease that I am reading. I call myself "gluten intolerant".
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