Discussions By Condition: I cannot get a diagnosis.

Please help with possible metabolic disorder presenting as carb sensitivity

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: Anonymous
  • August 8, 2010
  • 05:39 PM

http://forums.wrongdiagnosis.com/images/icons/icon5.gif Need help with a possible metabolic disorder manifested as Carb sensitivity
and no, I'm not talking about diabetes or any of her cousins.

Here's the story:

My friend suddenly developed a condition that has manifested as extreme carbohydrate sensitivity with the following symptoms (listed below and quoted from his text) - what I'm asking here is if anyone has ever even HEARD of this condition or has a clue about what it is or what is happening. He's been tested for diabetes and hypoglycemia (though he has not had a glucose tolerance test - which I believe he should have) and those tests are negative. I have tested his blood sugar when I saw him eating carbs and it is normal - not low OR high. But the addition of the digestive symptoms makes me think it is more than simple carb sensitivity...any ideas at all would be of MAJOR help:

These symptoms come on quickly after eating the carbs. The severity of these symptoms are proportional to the amount of carbs eaten. The symptoms are listed in the order they appear:

1a) Extreme and uncontrollable lethargy

1b) Confusion and moodiness

2) Deep and lengthy sleep. (It's lasted as long as 18 hours in the worse cases, and is usually at least 10 or 12 hours. By "deep", I mean that I sleep through EVERYTHING. Alarms, phone calls, you name it.)

3a) (If forcibly awoken during aforementioned sleep) Zombie-like state... Confused, extremely moody, and visibly shaky

3b) Total lack of balance and coordination.

4) Moderate to severe lethargy.


5) "Foggy brain", which feels kinda like you look when you are having a diabetic crash . It's like my brain is in a fog, and I can't clearly "see" my thoughts. I can't find words, and I can't put together a clear and intelligent statement or thought.

6) Lower GI pain and discomfort. Kinda like pre-diahrrea pains. (This usually appears about 20 to 30 minutes after breakfast)

6) A mildly loose BM with the following qualities:
--- LOTS of volume
--- A lot of burning as it comes out... Like it's really acidic or something
--- VERY foul odor. And not the "usual" stinky-poo smell. It has a "colostomy bag" odor to it, along with a tinge of heavy (yellow) urine (odor only, no color or anything)

7) Within minutes of the BM... The brain clears and the lethargy departs... And in some ways, I have more energy and am more clear than I am on a normal day.


Now - I've observed this condition for myself and it is definitely a real phenomena. I've also observed that there are some foods he can eat sometimes and it won't happen - and then he eats them at another time and it knocks him OUT. If you have ever heard of this happening I would be eternally grateful if you'd point me in some new direction because getting him diagnosed could be very helpful. So far the only treatment seems to be "no/limited carbs."

Thanks for sticking with the post this long!

Tryn

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5 Replies:

  • I recently posted my own "medical mystery," and just wanted to say that I have some overlap with your friend. I have a number of unlisted symptoms, all but number 7. For 3a.) does what he says make sense? My mom woke me after I slept 14 hours, and said that I was openly hostile because she "just didn't understand" that I was uncomfortable because of the lobsters in the bed. Does he experience anything similar to this?As for the bowel movements, I actually hadn't associated it with carbs, but I know exactly what you're talking about. I've been avoiding MSG because I noticed that they happened most after eating Ramen, but I suppose carbs are also possible. Is the poop extremely (for lack of a better term) fluffy? The first thing I associated mine with was loose clay; it floated, and covered the entire surface area of the water in the bowl (if I may be so vulgar as to describe it this way.) On other occasions it was tar black and hard to, shall we say, clean up. I don't have a diagnosis, sorry, but I can suggest that he see a neuromuscular specialist. If he and I are experiencing the same problem, he might eventually have a manifestation of muscular problems. He might want to be tested for some types of muscular dystrophy; a lot of them have the stomach problems, and the lethargy with lack of balance and coordination are strong indicators. A liver function test wouldn't hurt either, especially if he bruises easily.
    Anonymous 42789 Replies Flag this Response
  • http://forums.wrongdiagnosis.com/images/icons/icon5.gif Need help with a possible metabolic disorder manifested as Carb sensitivity and no, I'm not talking about diabetes or any of her cousins.Here's the story:My friend suddenly developed a condition that has manifested as extreme carbohydrate sensitivity with the following symptoms (listed below and quoted from his text) - what I'm asking here is if anyone has ever even HEARD of this condition or has a clue about what it is or what is happening. He's been tested for diabetes and hypoglycemia (though he has not had a glucose tolerance test - which I believe he should have) and those tests are negative. I have tested his blood sugar when I saw him eating carbs and it is normal - not low OR high. But the addition of the digestive symptoms makes me think it is more than simple carb sensitivity...any ideas at all would be of MAJOR help:These symptoms come on quickly after eating the carbs. The severity of these symptoms are proportional to the amount of carbs eaten. The symptoms are listed in the order they appear: 1a) Extreme and uncontrollable lethargy 1b) Confusion and moodiness 2) Deep and lengthy sleep. (It's lasted as long as 18 hours in the worse cases, and is usually at least 10 or 12 hours. By "deep", I mean that I sleep through EVERYTHING. Alarms, phone calls, you name it.) 3a) (If forcibly awoken during aforementioned sleep) Zombie-like state... Confused, extremely moody, and visibly shaky 3b) Total lack of balance and coordination. 4) Moderate to severe lethargy. 5) "Foggy brain", which feels kinda like you look when you are having a diabetic crash . It's like my brain is in a fog, and I can't clearly "see" my thoughts. I can't find words, and I can't put together a clear and intelligent statement or thought. 6) Lower GI pain and discomfort. Kinda like pre-diahrrea pains. (This usually appears about 20 to 30 minutes after breakfast) 6) A mildly loose BM with the following qualities: --- LOTS of volume --- A lot of burning as it comes out... Like it's really acidic or something --- VERY foul odor. And not the "usual" stinky-poo smell. It has a "colostomy bag" odor to it, along with a tinge of heavy (yellow) urine (odor only, no color or anything) 7) Within minutes of the BM... The brain clears and the lethargy departs... And in some ways, I have more energy and am more clear than I am on a normal day.Now - I've observed this condition for myself and it is definitely a real phenomena. I've also observed that there are some foods he can eat sometimes and it won't happen - and then he eats them at another time and it knocks him OUT. If you have ever heard of this happening I would be eternally grateful if you'd point me in some new direction because getting him diagnosed could be very helpful. So far the only treatment seems to be "no/limited carbs."Thanks for sticking with the post this long! TrynHi TrynYour description of symptoms matches mine almost exactly ! I have been so far unable to find out what is going on for sure. I have been tested for diabetes so many times and dont have it. I did struggle with insulin resistance for a while. Sorry can't really assist more than that. I do believe my problem to be my thyroid and sensitivity of the gland. It is as if I veer from low to high and back again depending upon my levels of exercise, what I eat etc.Wannabe96
    Anonymous 42789 Replies Flag this Response
  • I don't have any personal experience with the issues you all are describing, but I'm a bit of a nutrition geek. Have you experimented with dropping gluten from your diet? It wouldn't surprise me at all to see your symptoms get significantly better if you completely omitted any gluten from the diet, even if you have tested negative for a gluten allergy. I strongly recommend picking up the book "the Paleo Solution" by Robb Wolf and read it! It gives a lot of insight about how a lot of the foods we eat can make us sick. I am in no way associated with him or this book- I'm a personal trainer and am very interested in how our bodies handle foods and in food as medicine and do a lot if reading on the subject. Just give it a shot- it can't hurt! Good luck :)
    Anonymous 42789 Replies
    • October 7, 2010
    • 02:58 PM
    • 0
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  • I have been experiencing the exact same symptoms & have gone to numerous doctors to try & figure out what is going on. After tons of misdiagnoses, the ONLY DX (diagnosis) & TX (treatments) that have actually provided ANY BENEFITS have been the DX of intestinal yeast overgrowth and decreased good GI bacteria which I was treated with probiotic bacteria pills everyday to replace the good bacteria in my intestines and Diflucan twice a day for 7 days each attempt to cure the high levels of yeast overgrowth which can be tested thru bloodwork. Each series of these ongoing attempts of treatment has been basically trial & error as to the dosage amt & to the length of each series. I have, after probably 10 rounds--weeks of treatment, shown very much improvement in my digestive symptoms (less gas, pain, less blood sugar effects of hypoglycemia, less nausea after eating, feeling sleepy & crazy, ect.) Another DX that has helped tremendously (whether its accurate or not, the treatment for the supposed DX is helping) is the DX of Congenital Hyperinsulinism which causes post-prandial (after eating) rebound hypoglycemia (low BG-blood glucose/sugar). I am being treated with Proglycem and Precose for that, which is helping me not have so many crazy "episodes" as discussed. The precose helps by slowing the digestion of simple carbs so that a huge bloodsugar spike won't cause a large amt of insulin to be released later, and the proglycem helps by slowing the amt of insulin released so that I have less attacks or "episodes" as we have discussed. Also, I have for some reason noticed that I have developed a Severe intolerance to milk products. I have tried my best to stay away from milk & this has also dramatically reduced my symptoms or "episodes". A website you may want to look at that seems pretty promising at helping to cure bowel problems & our symptoms caused from them is www.leakygutcure.com. I just came across it a few days ago & I've only read abt it, but I am thinking seriously abt trying out what she says, because after everything I've already tried, what could it hurt. The info sounds pretty right on target with my problems & the treatment stuff she suggests actually makes sense & could possibly help me & you as well. I have been doing a lot of research on my own & think that I may have some sort of autoimmune problem that is severely affecting my bowels & also causing these problems which have not been cured with any of these treatments so far but have helped dramatically reduce symptoms, although not yet manageable, but has reduced my symptoms. On top of trying the leaky gut cure program, I am going to talk to my doctor abt possibly trying steroids to help treat my severely inflamed bowel and see what he thinks abt it. If many of these problems were started because the root of the problem is inflamed intestines (large or small), then it would only make since to me to decrease the inflammation & possibly stop all the other problems from ever occuring at all once the bowels have healed properly. I don't know if this is what is going on with you or not, I just wanted to share my story in which I have struggled now for 6 yrs with this increasingly worsening condition. My symptoms eventually got so bad that I was not digesting any of the food I ate or absorbing nutrients and started swelling severely in my body especially lower extremeties due to protein deficiency (low blood albumin levels). I weighed 88 lbs, including the extra 10 lbs of fluid I was carrying, if not more, because of the severe nausea, vomiting, sleepiness, pain, malabsorption of food, ect. Finally, after my blood sugar just started dropping every 30 mins & I couldn't sleep without food in my hands & mouth, I was hospitalized to see if I had an insulinoma--which I did not. So I was put on precose & proglycem & given the quick fix DX because the treatment seemed to be helping the symptoms improve (now I was only having abt 10 episodes of craziness a day, instead of every 30 mins.) FYI, to test for post-prandial hypo (low) or hyper (high) glycemia (blood sugar), you need to do BG checks abt 30 mins or so after eating & then every 30 mins or so to test for elevated BG; & then when he starts showing those crazy feelings, sleepiness, test him again every few mins to see if his BG is dropping & how fast. Then I would take several sips of OJ or sugary soda to help bring it back up, not too much because you don't want to overdo it & then have even worse rebound hypoglycemia later. I don't know the cause of yours or my problems & it could be a combo of things feeding off & causing other problems, like food allergies, aotoimmune problems, bacterial or yeast overgrowth, gastric dumping syndrome, an actual metobolic disorder, & so on. I have managed to help my symptoms my taking small sips every 30 mins of OJ or sugary sodas (ONLY A FEW SIPS), and drinking diet stuff & water all the other times; this along with staying away from large amts of carbs (no white bread!, simple sugars, cereals, popcorn, ect) and eating proteins & some starches TOGETHER (never alone bc need a quick sugar now(slow digesting carbs), & then some for later (the protein). You will more than likely (almost everytime you can count on it), have a BG drop soon after, IF ONLY 1 is eaten!!! Because just eating a protein (like eggs) takes a long time to digest & probly takes you even longer if you are digesting it at all, so when insulin is released, you have no quick sugar for now & BG drops quickly after eating. Likewise, if only starch is eaten (like potatoes), the insulin is released & you have quick sugar for now, but then when used up, nothing is there for later to counteract the excess insulin & your BG will also drop later. I cannot itterate enough the importance of eating starches & proteins for your large meals, and for small snacks starches (like a peice of small fruit) with a protein (likes a small serving of nuts, or jerky) that are more slowly digested. Hope all this info helps & at least gives you a starting place to begin looking. Reminder: you NEVER need to just sleep it off if it (symptoms) is due to low blood sugar because your BG could drop too low and if you are asleep, you may not realize it and go into a permanent fog (possible coma or irreversible brain damage from lack of quick/immediate sugar to your brain!) You definately need to see a doctor and continue follow-up care & keep searching for a cure because if your symptoms are from low BG, that is VERY DANGEROUS & NEVER SOMETHING TO JUST SLEEP THRU until you feel better! Good luck, I'll be praying for you (that also helps, going to church & keeping your faith strong along with providing you many people to help be supportive of you & your family during your illness!)
    Anonymous 42789 Replies
    • November 8, 2010
    • 08:41 PM
    • 0
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  • Diagnosed with SIBO.I had the same symptoms.Like the last reply, I was treated with Rifaxamin 500 mg 3 times per day timed.I was also prescribed Flagell all of these meds were for 10 days. I then was treated to re-introduce the good bacteria back into the intestine with a specific mix of probiotics.I was prescribed was by GI Pro Health VSL #3, 2x day x30days. I was to take this only following the conclusion of the other drugs. Followed SCD diet for 40 days and L Glutamine. It worked;)
    Anonymous 1 Replies
    • February 6, 2014
    • 03:21 AM
    • 0
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