dreamkatcha
09-18-2008, 04:20 PM
Hi everyone,
I'm really at the end of my tether with obsessing over the endless possibilities which may help to explain my symptoms and was wondering if any of you have experienced the same thing and have any solutions.
I used to have daily bouts of migraine aura, but the worst symptoms ceased when I gave up diet drinks containing artificial sweeteners. While grateful for this not so small mercy, I now 'just' suffer from alternating phases of feeling dopey, slow, confused, lethargic, and unable to focus for more than a few seconds, and the precise opposite - energised, alert, clear-headed and quick-witted.
Could it all be E numbers? Salicylate intolerance? Or something completely different?
I'm really at the end of my tether with obsessing over the endless possibilities which may help to explain my symptoms and was wondering if any of you have experienced the same thing and have any solutions.
I used to have daily bouts of migraine aura, but the worst symptoms ceased when I gave up diet drinks containing artificial sweeteners. While grateful for this not so small mercy, I now 'just' suffer from alternating phases of feeling dopey, slow, confused, lethargic, and unable to focus for more than a few seconds, and the precise opposite - energised, alert, clear-headed and quick-witted.
Could it all be E numbers? Salicylate intolerance? Or something completely different?
Sponsor
JohnR41
09-29-2008, 01:41 PM
It sounds like you might have a blood-sugar problem where your blood-sugar goes from being too high to too low. Whenever you get to feeling "dopey, slow, confused, lethargic, and unable to focus," try eating some protein and see if that works. If it does, then you have a blood-sugar problem and need to be on a special diet.
dreamkatcha
09-29-2008, 03:48 PM
That does sound pretty logical because I do have a low sugar diet, especially where breakfast and lunch is concerned and I don't eat at all between meals. Thanks for the suggestion, I'll give it a go. :)
As the symptoms seem to be worse after eating certain types of food I'm currently investigating the possibility that it's a wheat/gluten intolerance. The tension in my forehead doesn't seem to occur if I stick to non-wheat based cereal for instance. I still generally feel dazed and washed out, but maybe I need to maintain the gluten-free diet for longer to give it a chance to kick in properly.
As the symptoms seem to be worse after eating certain types of food I'm currently investigating the possibility that it's a wheat/gluten intolerance. The tension in my forehead doesn't seem to occur if I stick to non-wheat based cereal for instance. I still generally feel dazed and washed out, but maybe I need to maintain the gluten-free diet for longer to give it a chance to kick in properly.
Shannatoo
09-29-2008, 10:15 PM
I highly recommend trying a wheat/gluten free diet for a minimum if six weeks.... I cannot tell you how much my life improved after eliminating gluten. Before discovering my gluten issue, I has similiar episodes of feeling lethargic, "dopey" and had trouble focusing (among killer migraines, severe sinus pressure, etc)....
I recommend eliminating all wheat/gluten for six weeks and keep track of all of your symptoms on a calender. After the six weeks is up SLOWLY put gluten back into your diet (on the first day of introduction, eat about 1/2 cup of something glutenous twice throughout the day, if no symptoms do the same thing the next day, if symptoms arise, you've found the culprit!)
Good Luck!
Shanna
I recommend eliminating all wheat/gluten for six weeks and keep track of all of your symptoms on a calender. After the six weeks is up SLOWLY put gluten back into your diet (on the first day of introduction, eat about 1/2 cup of something glutenous twice throughout the day, if no symptoms do the same thing the next day, if symptoms arise, you've found the culprit!)
Good Luck!
Shanna
dreamkatcha
09-30-2008, 04:28 PM
Great to hear it worked for you. It must have been such a relief to see some light at the end of the tunnel.
I'll definitely keep it up and see what happens because I think I may be onto a winner here. Anyone who says they don't eat much wheat/gluten and so that's unlikely to be the cause of any symptoms they may be experiencing likely isn't aware of its prolific use in the food manufacturing process. It's in practically everything whether it's naturally a main ingredient or added for texture or flavouring. So irritating when you're trying to avoid it. You think you're playing safe by buying rice based products until you look at the ingredients list and discover that many of them contain barley malt flavouring.
What I'd like to see is a list of non-specialist processed stuff that is safe for coeliacs (one that you don't need to become a member to see I should add). Buying everything from supermarket 'Free From' ranges is idiot-proof, but it's not easy to justify spending two or three times the price of the ordinary glutenous brands.
I'll definitely keep it up and see what happens because I think I may be onto a winner here. Anyone who says they don't eat much wheat/gluten and so that's unlikely to be the cause of any symptoms they may be experiencing likely isn't aware of its prolific use in the food manufacturing process. It's in practically everything whether it's naturally a main ingredient or added for texture or flavouring. So irritating when you're trying to avoid it. You think you're playing safe by buying rice based products until you look at the ingredients list and discover that many of them contain barley malt flavouring.
What I'd like to see is a list of non-specialist processed stuff that is safe for coeliacs (one that you don't need to become a member to see I should add). Buying everything from supermarket 'Free From' ranges is idiot-proof, but it's not easy to justify spending two or three times the price of the ordinary glutenous brands.
AuntieLeela
09-30-2008, 07:40 PM
There are free GF product lists available on the internet - make sure you're using one that's updated frequently. When in doubt most products list a 1800 number on their packaging. I've called right there in the store.
Rice Chex cereal is GF and says so on their (new) packaging.
This is a partial list of companies that have unequivocally stated that they will declare gluten on their ingredient list regardless of what type. Celiac's mantra: Always read the ingredients.
Aunt Nelly's, Baskin Robbins, Ben & Jerry, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, Coca Cola, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hain Celestial Group, Hellman's, Hormel, Jiffy, Klondike, Knorr, Kozy Shack, Kraft, Libby's, Lipton, Martha White, McCormick, T Marzetti, Muir Glen, Nabisco, Nestle, Old El Paso, Ortega, Pepsi, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Sara Lee et al: Kahn's, Ball Park, Hillshire Farms, Jimmy Dean, etc., Seneca Foods, Smucker's, Stokely's, Suave Hair Products, Sun Maid, Sunny Delight, Tyson, Unilever, Wishbone, Yoplait and Zatarain's.
Most grocery stores have their own store brand GF lists. Some are online, others will mail it to you.
A diagnosis of Celiac carries with it long term health risks that gluten intolerance does not.
Rice Chex cereal is GF and says so on their (new) packaging.
This is a partial list of companies that have unequivocally stated that they will declare gluten on their ingredient list regardless of what type. Celiac's mantra: Always read the ingredients.
Aunt Nelly's, Baskin Robbins, Ben & Jerry, Betty Crocker, Blue Bunny, Breyers, Campbells, Cascadian Farms, Celestial Seasonings, Coca Cola, Country Crock, Edy's, General Mills, Good Humor, Green Giant, Haagen Daz, Hain Celestial Group, Hellman's, Hormel, Jiffy, Klondike, Knorr, Kozy Shack, Kraft, Libby's, Lipton, Martha White, McCormick, T Marzetti, Muir Glen, Nabisco, Nestle, Old El Paso, Ortega, Pepsi, Pillsbury, Popsicle, Post, Progresso, Ragu, Russell Stover, Sara Lee et al: Kahn's, Ball Park, Hillshire Farms, Jimmy Dean, etc., Seneca Foods, Smucker's, Stokely's, Suave Hair Products, Sun Maid, Sunny Delight, Tyson, Unilever, Wishbone, Yoplait and Zatarain's.
Most grocery stores have their own store brand GF lists. Some are online, others will mail it to you.
A diagnosis of Celiac carries with it long term health risks that gluten intolerance does not.
dreamkatcha
10-01-2008, 06:53 PM
Thanks very much for the information, that's a big help. I checked out Sainsburys' web site and they have a PDF available which lists their own GF products.
A diagnosis of Celiac carries with it long term health risks that gluten intolerance does not.
How do you mean? Are you talking about the repercussions of eliminating essential nutrients from your diet?
A diagnosis of Celiac carries with it long term health risks that gluten intolerance does not.
How do you mean? Are you talking about the repercussions of eliminating essential nutrients from your diet?
AuntieLeela
10-01-2008, 09:17 PM
Celiac is an autoimmune disorder, it carries with it certain genetic and biological risks that, while hopefully modified by a strict GF diet, do not go away entirely. Your primary care doctor needs to know what he or she should be keeping an eye out for in the future.
Diabetes, autoimmune (Hashimoto's) hypothyroid, Grave's disease, Vitiligo, Sjogren's syndrome, migraine, cancer - intestinal, esophageal, lymphoma and liver, peripheral neuropathy, autoimmune liver diseases . . . to name a few. And that's not taking into account the effects of long term small intestinal damage or even the (thankfully rare) possibility of Refractory Celiac, that's Celiac that doesn't respond to a GF diet, which can be fatal.
Gluten Sensitivity (non-autoimmune gluten intolerance) is most likely not genetic, is similar to lactose intolerance in that enzymes and/or avoidance can provide symptomatic relief. Risks involve intestinal permeability* and malabsorption due to rapid/disturbed digestion but not damaged villi as in Celiac.
*obviously we have a vicious circle here since intestinal permeability can lead to the development of autoimmune disorders - including Celiac. Some theorize that GS is simply early stage Celiac disease before the dysfunctional immune system response is triggered. Unfortunately there's been almost no research into GS.
Diabetes, autoimmune (Hashimoto's) hypothyroid, Grave's disease, Vitiligo, Sjogren's syndrome, migraine, cancer - intestinal, esophageal, lymphoma and liver, peripheral neuropathy, autoimmune liver diseases . . . to name a few. And that's not taking into account the effects of long term small intestinal damage or even the (thankfully rare) possibility of Refractory Celiac, that's Celiac that doesn't respond to a GF diet, which can be fatal.
Gluten Sensitivity (non-autoimmune gluten intolerance) is most likely not genetic, is similar to lactose intolerance in that enzymes and/or avoidance can provide symptomatic relief. Risks involve intestinal permeability* and malabsorption due to rapid/disturbed digestion but not damaged villi as in Celiac.
*obviously we have a vicious circle here since intestinal permeability can lead to the development of autoimmune disorders - including Celiac. Some theorize that GS is simply early stage Celiac disease before the dysfunctional immune system response is triggered. Unfortunately there's been almost no research into GS.
dreamkatcha
10-02-2008, 06:55 PM
I had no idea there were so many other issues to factor into the equation so thanks for the education.
My doctor isn't exactly proactive when it comes to my health. Generally his input consists of saying yes or no to a request for some medication or other I've researched on the net. He tends to look at me as though I've just stepped off a UFO whenever I explain my symptoms. I find it hard to believe I'm medically unique in any way. Oh well, I find the internet is a much more reliable source of knowledge these days.
My doctor isn't exactly proactive when it comes to my health. Generally his input consists of saying yes or no to a request for some medication or other I've researched on the net. He tends to look at me as though I've just stepped off a UFO whenever I explain my symptoms. I find it hard to believe I'm medically unique in any way. Oh well, I find the internet is a much more reliable source of knowledge these days.
dreamkatcha
10-13-2008, 03:16 PM
Well since eliminating gluten I've not felt that heavy-headed brain fog, but my energy levels and degree of alertness and light-headedness is up and down like a yo-yo. Oddly my knees have begun to ache, which is a new symptom.
Also eating many foods seems to cause an itchy skin rash which leads to hives (known as urticaria I believe) when scratched. This was happening before I started the GF diet, though my reaction to food has become hypersensitive.
If I have breakfast at 7.00am, I'll be dopey and light-headed by 10.00am. If I eat a piece of fruit I slowly improve, and then the process repeats a few hours after lunch.
Is all this to be expected and do you think it will settle down with time?
I went for a blood test today and will know the results in a few days time. I'm praying I get a positive diagnosis of any kind because mysterious, incurable symptoms are far worse than fumbling in the dark.
Also eating many foods seems to cause an itchy skin rash which leads to hives (known as urticaria I believe) when scratched. This was happening before I started the GF diet, though my reaction to food has become hypersensitive.
If I have breakfast at 7.00am, I'll be dopey and light-headed by 10.00am. If I eat a piece of fruit I slowly improve, and then the process repeats a few hours after lunch.
Is all this to be expected and do you think it will settle down with time?
I went for a blood test today and will know the results in a few days time. I'm praying I get a positive diagnosis of any kind because mysterious, incurable symptoms are far worse than fumbling in the dark.
dreamkatcha
11-28-2008, 02:06 PM
Well I finally got my blood test results back - they're normal apparently so I have no idea where I stand now. Could it be that you can not have celiacs disease, but suffer the same symptoms if you overdose on gluten? I was having wheat-based foods for almost every meal at the time.
I'm now waiting on the results of some RAST tests so hopefully that will provide some clues.
I'm now waiting on the results of some RAST tests so hopefully that will provide some clues.
dreamkatcha
12-15-2008, 09:00 AM
I now have all my blood tests back. Thyroid is normal, glucose, blood cell count and IgE levels are all normal and I'm not gluten intolerant apparently.
I've got my sights set on the possibility of reactive hypoglycemia now seeing as my diabetic-like symptoms seem to fit. The problem is certain factors seem to contradict this i.e. I can eat high carb Coco Pops and microwave rice without becoming instantly dopey and confused, but All Bran - which seems to have the lowest carb content of the cereals - doesn't agree with me. High carb instant oat porridge has the same result.
My normal IgE levels indicate that I'm not allergic to wheat or oats, or anything I'm currently eating, so what does that leave?
I've got my sights set on the possibility of reactive hypoglycemia now seeing as my diabetic-like symptoms seem to fit. The problem is certain factors seem to contradict this i.e. I can eat high carb Coco Pops and microwave rice without becoming instantly dopey and confused, but All Bran - which seems to have the lowest carb content of the cereals - doesn't agree with me. High carb instant oat porridge has the same result.
My normal IgE levels indicate that I'm not allergic to wheat or oats, or anything I'm currently eating, so what does that leave?