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90% Sure I Have It - Biopsy On Monday


wendysmiling

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wendysmiling Newbie

Hi,

I'm pretty sure I have celiac. I have dx or gastroparesis (gut paralysis) and IBS. I also get a blisty rash that peels the layers of my skin off on both palms when I get stressed. The bolded words are the symptoms I'm having and have had for about 5 years....some go back to childhood.

Classic symptoms include:

o Abdominal pain

o Anemia

o Cramping

o Intestinal gas (foul)

o Indigestion

o Distention - huge (over 10 inches).

o Bloating

o Constipation

o Diarrhea (chronic)

o Nausea

o Steatorrhea (fatty stools)

o Vomiting

o Weight gain

o Weight loss with large appetite

Other symptoms:

o Aphthous ulcers (canker sores)

o Bone or joint pain

o Dental enamel defects

o Depression

o Lack of concentration (foggy)

o Poor memory

o Fatigue, weakness and lack of energy

o Infertility (male and female)

o Irritable bowel syndrome

o Elevated liver enzymes

o [b]Migraines

o Muscle cramps

o Osteoporosis

o Panic attacks

o Peripheral neuropathy ?? (gastroparesis?)

o Rheumatoid conditions

o Vitamin Deficiencies in B12, D, and K.


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mushroom Proficient

Welcome, Wnedysmiling.

Yes, from your list of symptoms, I am pretty certain that you have "it" too. Whether that "it" turns out to be confirmed celiac disease or "merely" gluten intolerance, I think that you should try the gluten free diet right away, because the solution is the same for both conditions. Many people test negative for celiac even with these symptoms. They are either false negatives, or the person is non-celiac gluten intolerant/sensitive which is equally serious but not regarded so by many doctors. Many doctors will tell you if you don't have celiac you can continue to eat gluten. Don't listen to them. The only way you will know if gluten is causing your problems is to completely eliminate it from your household (see Bea's response to Chanterelle (I'm so Frustrated) on this page of the board).

Good luck with your biopsy results. It does help many people to have that definitive diagnosis, makes them more strict with the diet :o

But whichever it turns out to be you should be just as strict.

Neroli

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      @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?  
    • HectorConvector
      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. 
    • Russ H
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    • Jane02
      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. 
    • Jane02
      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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