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Dermatitis Herpetiformis
Discussions concerning the skin condition associated with celiac disease.
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Recent Activity
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- knitty kitty replied to HectorConvector's topic in Related Issues & Disorders316Terrible Neurological Symptoms
@HectorConvector, My blood glucose level would spike after I ate. It wouldn't return to "normal" fasting blood glucose level for longer and longer. Blood glucose level should return to normal an hour after eating. Mine would take two hours, then three hours, then longer. So over night fasting blood tests wouldn't necessarily be very high until they... -
- HectorConvector replied to HectorConvector's topic in Related Issues & Disorders316Terrible Neurological Symptoms
These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have... -
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- Russ H replied to dsfraley's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease159 y/o Son Diagnosed with Celiac Disease; Persistent Symptoms: Does this Sound Familiar?
I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease...- 2
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- Jane02 replied to HectorConvector's topic in Related Issues & Disorders316Terrible Neurological Symptoms
Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.- 1
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By knitty kitty · Posted
@HectorConvector, My blood glucose level would spike after I ate. It wouldn't return to "normal" fasting blood glucose level for longer and longer. Blood glucose level should return to normal an hour after eating. Mine would take two hours, then three hours, then longer. So over night fasting blood tests wouldn't necessarily be very high until they got really bad. But the peripheral neuropathy would feel the worst while my glucose was too high. My blood glucose meter confirmed this. On top of all that, my Celiac disease was still undiagnosed at the time, and I was suffering from malabsorption and nutritional deficiencies. The deficiencies in B vitamins affected not just insulin production in the pancreas, but also the nerves in my extremities. Nerves need B vitamins to maintain the myelin sheath protecting the nerves (like the plastic coating on electrical wires) when they fire. When the myelin sheath is not maintained, that "pins and needles" feeling starts and increases as more of the sheath is damaged. My parathesia progressed until the "pins and needles" went from my toes all the way up to my thighs. Without sufficient vitamins, I started slowly losing weight. Our bodies will start using not only stored fat, but also tear down our own muscles to provide fuel for the body to stay functional. I hope you don't have pre-diabetes or diabetes. Most diabetics have a thiamine deficiency. How much thiamine are you taking? What form of Thiamine are you taking? -
By HectorConvector · Posted
These symptoms started initially in 2009/2010 and I've had normal blood sugar readings in all the blood tests - so never been diagnosed with diabetes or pre-diabetes. I did request another blood test recently (yesterday in fact) which I have had, and if the blood sugar looks high it'll come up in my results which I'll be able to see next week. I don't have any other symptoms relevant to diabetes except for the nerve pain, which had been in existence for many years with "normoglycaemia", but we'll see. In terms of my current diet: I get roughly 60% of my calories from fat and protein, and 40% from carbs (an estimation). I'm on currently about 2200 calories per day, which is too low for someone of my size, so I've been slowly losing weight that I want to put back on again. But I don't want to do that without using weights, which flare my pain up unfortunately. -
I used to react very badly to milk - much worse than to gluten and I was always worried about exposure. Any diary product would make me extremely ill and put me out of action for 5 days or so. I would have watery and bloody diarrhoea, bloating, malaise and be unable to eat. If I recall correctly, it was about a year after being diagnosed with coeliac disease and going on a strict gluten free diet that I accidentally consumed dairy products and didn't react. From then on, I have been fine with diary.
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Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
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Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
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