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anyone else gluten intolerant?


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Just curious - I just read that POTS symptoms can be triggered by certain processed carbs, and over a year ago I stopped eating all gluten because I thought Celiac disease was causing all my symptoms, including the extreme tachy. I felt so good for about 6 months straight when I stopped eating gluten, still hadminor bouts of symptoms, but I improved dramatically. My doctors told me I had IBS and was not Celiac, but I stayed off it because I feel like crap when I ate flour/oats/wheat/etc...

Has anyone else read this or experienced this? I am still technically undiagnosed with POTS - but this seemed to be yet another indicator that I have it.

Thanks!

And by the way - since joining and posting on this website, I have felt so much more hopeful - and it is great to meet so many nice caring people :)

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I want to add my confusion to this mix.

I have been tested in the blood for gluten intolerance: negative

I have been allergy tested in my blood for wheat intolerance: negative

I seem to feel worse when eating wheat?! Go figure?????????

I eat it anyway.

Wish I could make some sense out of all this!? :)

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I will try and find the quote on carbs and symptoms to post here...

Fututrehope I tested negative for all those as well...but still felt horrible both in my tummy and all the other POTS symptoms after eating gluten - it really helped when I stopped.

If anyone wants recommendations for great gluten free foods let me know :) I am an expert by now and swear by them.

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For what it's worth: There is a difference between eating whole wheat, a complex carbohydrate, and eating white (wheat) flour products, simple carbohydrates. You can get the same response to white flour that you do to white sugar, triggering sx.

From the "What helps" page on this site:

"Refined carbohydrates, such as white flour and sugar, can exacerbate hypotension (Mathias, 2000)"

Christopher Calder's page mentions that reactive hypoglycemia is found in POTS and the body responds to ingesting the (simple) carbs with increased adrenaline from the raised blood sugar, which would take us on down the line with our sx.

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I am I am! I am negative for cealiac too yet feel crappy if i eat gluten or dairy. I admit i do cheat a little bit and have milk in my tea and have soy sauce with noodles but i dont eat bread or drink milkshakes etc.

I have found its good for keeping my weight down too. I have been breaking my diet lately and now i dont fit into many of my clothes :)

I would love some food ideas! I was going to eat gluten free pizza last night but ended up not going to that resturant .. have you tried it? I dont want to pay for a pizza then find its gross like most gluten free substitutes are.

Wow i just started every sentence with 'I' except this one. How self centerd of me :)

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I am I am! I am negative for cealiac too yet feel crappy if i eat gluten or dairy. I admit i do cheat a little bit and have milk in my tea and have soy sauce with noodles but i dont eat bread or drink milkshakes etc.

I have found its good for keeping my weight down too. I have been breaking my diet lately and now i dont fit into many of my clothes :)

I would love some food ideas! I was going to eat gluten free pizza last night but ended up not going to that resturant .. have you tried it? I dont want to pay for a pizza then find its gross like most gluten free substitutes are.

Wow i just started every sentence with 'I' except this one. How self centerd of me :)

***My favorite gluten free bread sub is called Chebe bread, you can order it online or find it at most health food stores. THey have a pizza/calzone mix and a buscuit mix, its all tapioca based, and is sooooo good! The other great brand I use is rice pasta called Tinkyada, it tastes like regular pasta and is all brown rice based. My husband can't tell the difference.

Hope that helps!

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I think that with any chronic illness its important to eat clean whether or not you are gluten intolerant or have any other food issues....

Eliminating all processed foods, sugar containing foods, yeast containing foods, and possibly corn, wheat , and dairy if you are highly sensitive.

Adding lots of whole foods like fresh fruits and veggies, whole grains like spelt, quinoa, millet, and oats, and lean meats like chicken and fish help keep the the burden off your body.

Of course if you were to start any different type of diet definelty see a good naturopathic Dr to help you out and that can answer specific problems.

I know that If I go back to eating "regularly" and fall off the wagon I pay big time... My body feels so much better in general when I really try and stick to the basics......

Hope this helps! :)

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"Certain Foods, such as dairy products, may increase symptoms in some patients. White sugar and other refined carbohydrates can exacerbate hypotension by causing increased dilation in the gut (Mathias, 2000). It is important to identify and avoid food triggers. Studies show that gluten sensitivity may play a role in neurological disorders (Hadjivassiliou, Gibson, Davies-Jones, Lobo, Stephenson & Milford-Ward, 1996)."

Just found the quote! Thought I'd share.

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It's interesting to note that there are other people out there with the same problems that I have. When i go to different functions, it seems that I am the only one refusing to eat certain foods. I've found that my acid reflux is greatly decreased when I eat proplerly. Also, my anxiety and lack of concentration are reduced when I stay off the sugar and simple carbs. I do eat oats though but in home made granola (1/2 oats, 1/2 almonds, walnuts, pumpkin, sunflower and sesame seeds, peanut butter, oil, Splenda) Because the oats are not cooked in water they take longer to digest than porridge made with oats does. The longer it takes something to digest, the better. I also can eat whole rye crackers though some would argue that they taste a lot like cardboard. :)

Often the reason people feel crummy on things made with flour is because they are beginning to experience something called 'insulin resistance' or reactive hypoglycemia (I have both). Before I began to eat properly, I had this severe hunger, knot in my stomach, kind of feeling. It was debilitating because I could concentrate on nothing else. Thinking I was hungry, I ate more and the worse it got. Once I started to watch what I ate, the feeling eventually went away after about three or four months. In fact, that feeling, or the anxiety is what warns me that I need to shape up when it comes to diet and exercise. For some reason taking Florinef also reduces that severe hunger feeling.

It would be good to know more about diet and POTS.

Lily

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Lily,

I can SO relate to what you are saying!! But I don't know what to do about it! I alternate between hunger that is just not appeased, and nausea. I feel better sometimes when I eat, but I've never had true low blood sugar (and I check it!).

I'm sure it is somehow related to dysautonomia. I just wish I knew what to do!

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Diana,

My blood sugar is not generally low either. I managed to get an appointment with an endo a few years ago and when I mentioned my symptoms she suggested that I probably had reactive hypoglycemia. She wouldn't give me a glucose tolerance test though because my fasting blood sugar was normal. A doctor friend told me that it can sometimes be almost impossible to diagnose hypoglycemia unless you have a five hour test rather than the two hour one. I know that my blood sugar starts off in the normal range in the morning, jumps quite a bit after ingesting sugar and then drops to below the normal range after three or four hours causing me to be very tired and in need of sleep.

I find that diet is the only thing that really helps - meat, fish, eggs, cheese, nuts, seeds and vegetables that don't contain a lot of sugar (peas, corn and root vegetables eaten in smaller quantities) No bread, rice, pasta, potatoes or sugar. Eat small meals but more often. Also, I believe that Florinef helps because before I started taking it, even a diet drink would cause that hunger knot in my stomach. I read that even though your body isn't getting sugar, when you drink a diet soda, your body 'thinks' it is getting sugar and responds as though it was.

It can take a few months before a person adjusts to a new way of eating and in fact I felt worse before I began to feel better. My anxiety level is tolerable and I don't have that unbearable hunger knot in my stomach nearly as often and then only for a short time.

It's not easy to give up some of the stuff we love to eat and I confess that occassionally I'll eat something that I shouldn't. It sometimes takes awhile before it catches up with me but it always does. I guess it's a matter of knowing what you want more - the stuff you shouldn't eat or to feel better.

Lily

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Hi Guys,

This is a very interesting topic to me!!! I to have been so much better since I stopped eating gluten. When I eat it I get horrible tummy ache and also very cloudy mind, off balance, hands and feet tingle, so many symptoms. So I did go to the gluten free diet, this has helped. But I am also the same with sugar. I have had Blood gluclose test and found I am normal although I had a severe reaction to it. My heart rate took off and so did my bp, it goes high then suddenly crashes low. This is an awful feeling. But with out sugar I get very weak and can hardly function. So I have a little bit of sugar a day and some days I am fine others it hits me hard.

One doctor told me he thought that my small intestine was not working and absorbing sugars and fats like its is suppose to. This was an er doctor and I have yet to get a reg. doctor to listen.

I have not taken any celiac tests though and know if you do not eat gluten before the test it can show negative. I dont think I could eat it and then have the test I would be to sick to do it.

I do hope we have a lot posting on this. It will be interesting to hear everyones thoughts.

Brenda R.

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Severe hunger can be as a result of hypoglycemia. It can also be a symptom of other diseases and also different medications.

Try doing some research on insulin resistance. If I'm not mistaken this has to do with our cells not being able to absorb glucose very readily. We have to combat this by eating less or no sugar and fewer simple carbs (if a person eats most vegetables they are getting more than enough glucose to power the brain) I read that 75% of people who are over weight are insulin resistant. When I went off the simple carbs I lost ten pounds without really trying. I never let myself get hungry but just ate high fiber foods. One of the signs of insulin resistance is the tendency to put weight on very easily. My weight is quite steady now though not exactly what I would like it to be. When your body is at its ideal weight it metabolizes glucose more readily as well so it is a bit of a catch twenty-two, trying to lose weight but not really being able to.

Also, there is a web site that has the glycemic index on it. This will tell you how quickly certains foods are metabolized. What is needed is to find those that are metabolized very slowly. Glucose is absorbed more readily if it is consumed with protein. Dry cereals have a lot of sugar in them even the ones that are not considered to be sweet cereals. It's best to check the grams of carbohydrate and sugar in the processed food you buy - there are so many things that are just loaded with sugar.

If you are plagued with anxiety as I am it is certainly worth trying to cut out the sugar and simple carbs for awhile to see if you do feel better. You may feel worse in the beginning but hold out and you'll find that you crave these foods less and feel better in the long run.

There is a web site that I found by doing a search on 'Diets for Hypoglycemia' They have a strict diet to start out with and a liberal diet with a few more foods added after your body has adjusted to the strict diet. For those who have anxiety or depression, it is certainly something to consider.

http://www.wrongdiagnosis.com/h/hypoglycemia/symptoms.htm

Lily

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i have the positive antibodies for celiac but so far my biopsies have been negative. i have considered going gluten free as a trial to see if it helps at all but haven't taken the plunge this far as i'd want to do it independently (aka when other changes with meds, etc. weren't occurring) and honestly i haven't had a long period when that's been the case since i've known about the antibodies. it's on my back burner but at the moment isn't tops on my list.

B) melissa

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i have the positive antibodies for celiac but so far my biopsies have been negative. i have considered going gluten free as a trial to see if it helps at all but haven't taken the plunge this far as i'd want to do it independently (aka when other changes with meds, etc. weren't occurring) and honestly i haven't had a long period when that's been the case since i've known about the antibodies. it's on my back burner but at the moment isn't tops on my list.

:D melissa

If you tested positive for the antibodies - chances are you have Celiac from what I understand, even if the biopsy is negative. My biopsy was negative as well...and I never got the antibody test because I refuse to start eating gluten again so they would show up.

I gotta tell you - I had soooo many symptoms clear up when I stopped eating gluten! It is not as tough as it sounds, most grocery stores have organic sections that carry rice and gluten free substitues for many foods. They say people that eat gluten free live 5-10 years longer because they remove the chemicals from their diet :D

I think diet plays SUCH a huge role in health, I wish more doctors would get with the program so we don't have to figure this all out ourselves!

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