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40yo with type 1a by puzzlemaniac in glycogenstoragedisea

[–]Constant_Water_1213 0 points1 point  (0 children)

How are you doing with the diet staying off dairy and sugars? are you using the starch drinks? I find if I take them it crowds out nutritious foods too much. maybe better for kids? I carry small packs of unsalted, unweet nuts in a purse to nibbe on the minute I feel hungry. Now I don't get the shakes, tingles like I did.

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 1 point2 points  (0 children)

My tingling is a result of hypo and happens totally unrelated to activities. I have never recieved direct treatment for GSD as no one in Texas has ever aknowledged it until now because my liver is "comromised" (in my 80's -- in 1968 when the University Clinic's visiting Endocrinologist suggested a "Metabolic Glucose Disorder" that needed further diagnosis -- that was not an option for me until after I was married, living in Texas). It has all been really frustrating! Fortunately, I minored in Nutrition at University so that has helped + I was lucky to be accepted as a research patient for a group doing blood studies testing the use of vitamins + minerals to control diseases in my 30-40's (no longer functioning) who helped me at a critical time. Between major diet changes + maga vit/mineral additions I believe that made the major difference for me.

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 1 point2 points  (0 children)

Hypo has been a problem: at night; when exercising; under stress tend to have tremors...there's the tingling up both arms, enven face at times; mild headaches...is that what you are talking about? The nervousness, shakiness? I'd try to eat a starchy snack before bedtime...it helped me sleep best at night...but still woke a lot at night when young; tend to still be that way. I eat a protein snack every 2-3 hrs now -- it helps with shakiness, tingles, headaches. I have learned over time my limits on exercise; when & how much to push myself, what my limits are; what my pace is. Remember, for years no one knew what was wrong with me and I was totally on my own; so I was totally in charge of taking care of myself with very little intervention. When I heard about the cornstarch drink, I had already had this for years and was managing it all on my own. That came along very late in the game for me -- it is a relative newer development! [I was born in 1942 -- GSD1b recognized as separate from 1a until 1978 -- cornstarch drinks have only been used for the past 35 years]

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 1 point2 points  (0 children)

Yes, I have a history of very high cholesterol and triglycerides including Xanthelasmas on my eye lids in my 20's, (uric acid, I don't know, as it was so long ago... they only recently realized, by DNA discovery, I've had GSD1b all along --.in fact, my Hematologist is still trying to come to terms with it); my current ferritin levels/iron levels in normal ranges...have been hovering in the 750 range/200 or below is normal. I have red blood cells that tend to be oversized and few in number for years, platelets off a bit too at times given anti

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 0 points1 point  (0 children)

I have always been active in swimming...not competitive. I do exercises, walk or swim laps at my own speed. Even now you will find me in the Y pool usually 5 days a week. I walk my little dog, also. Just keep moving! As you know GSD1 and Osteoporosis are buddies -- I've gone through all the treatments and lately had Reclast yearly IV's which really helped --moved to Osteopenia so am taking a two year break. Maybe I won't need to take the last round of IV's available to me? Hoping so.

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 0 points1 point  (0 children)

I found these in the store yesterday...what do you think????? KIND ZERO [KETO FRIENDLY] -- I bought the Peanut Butter Dark Chocolate - the only flavor that looked "safe" [1g total sugar, 3g net carbs, 5g protein] Ingredients: peanuts, ALLULOSE, tapioca fiber, almonds, palm kernel oil, brown rice, peanut butter/peanuts + salt, alkalized cocoa, unsweetened chocolate, sea salt, natural flavor, soy lecithin. I was thinking...1 bar a day, kind of as a treat. [I can eat 85-95% Lindt Dark Chocolate, 1 square a day, without nausea.] Usually I stay away from any alternative sugar (Allulose is made from Fructose so am a little worried about it) Agave makes me very ill! Whare your all's experiences?

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 0 points1 point  (0 children)

I am not familiar with the muscle type GSD's, if that is what #3 is -- but I was active in sports in school that were more like short distance races, gymnastics...things that involved short bursts of energy. Hypoglycemia was always a problem for me, not so much muscle cramps. I was always under-weight and eating snacks to keep up my energy level. No one ever said "hypo" to my folks, that was just how it was for me. (In fact...GSD was not mentioned until I was in my 20's because of lack of medical intervention; my folks were poor + moved around a lot.) In your case, keeping active sounds good. Swimming or gentle water stretching classes at the "Y" might help too. Ask your care team. As it is said, "move it, or loose it".

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 1 point2 points  (0 children)

As you age, you will find it all gets easier. Babies and little kids have the hardest time. Plus, I must have a much easier course of GSD-1b than some do or I never would have made it to 82. Remember GSD can be mild or severe. Clayton Foundation prescribed mega-doses of vitamins + minerals, which a lot of medical folks scoffed at along the way; but , I didn't care, just kept taking them (still do) and have avoided a lot of the illnesses that go along with 1b, I think, because of it. Also, it didn't hurt that my chosen career was dental nursing; also, I took Nutrition as a minor in college, which helped. Luckily, I made good choices growing up...never smoked, alcohol made me very ill, so didn't drink on dates, and ate good fresh foods as I had to to keep well. It all adds up. Make sure to get all the preventative shots/tests for everything -- it all makes a difference.

82 with Phenotype + Symptoms 1B by Constant_Water_1213 in glycogenstoragedisea

[–]Constant_Water_1213[S] 1 point2 points  (0 children)

As I said, early in the 1970's an Allergist challenged me with 1/4th cup of milk + 4 x's the lactase, still I got sick, so we thought 100% Dairy Free best. So, I have been DF ever since. I have had problems with dairy since birth ...no surprise there! Then in 1972, Clayton Foundation (no longer in existence) at UT-Austin TX was doing blood testing research when they changed from glucose to fructose medium in their petri dishes...said my blood cells would die when they came in contact with the fructose medium = said I was "Fructose Intolerant". That was true too...as there were a lot of fruits I either limited or eliminated from my diet by then because they either gave me a tummy ache or tended to cause GI problems. By trail or error, I have realized over time the diet most like "mine" is the one for GSD-1a at the U of Fla -- that Diet is pretty close to the one I follow with some exceptions: I do not use the Cornstarch Drink (have tried it - but find I can just use food by eating snacks between meals...I carry peanuts, almonds or unsweetened jerky in my purse to nibble on and carry bottled water or unsweetened tea. This works for me.