Please forgive me if this is long. I hoping someone with more experience can help me. 3 yrs ago, after yrs of testing, lots of drs and several wrong diagnosis I was finally told by a gastro dr that I have celiac or crohns because I had huge red blood cells. Celiac was it. I had always said i felt it was my small intestines and not my large. Crohn's was never found either with multiple colonoscopies. Recently I went to my primary dr for my massive headaches and fatigue. I just assumed it was my b12 level. He drew blood and started me on the shots. He called yesterday to say my b12 was normal but I have too many red blood cells. He set up a appt with a neurologist for the headaches as well.
My headaches feel like the back of my eyeball is going to explode. At time its both eyes. They are almost daily at this point. I am bad about not going to the dr. But anyone who has gone through the misdiagnosis routine can understand the frustration. Has anyone else had the same RBC problem and can point me in the right direction? I have the headaches, fatigue, moody, joint pain and hip pain, neuropathy in hands but worse in feet and no tolerance of cold. There are more but thats the list of the main ones.
Any suggestions or experiences would be appreciated!!!!!!!
If you continue to have headaches after being on a gluten-free diet, then I am not sure you aren't getting cross-contamination of gluten somehow. Sometimes it is in lipstick or some other unsuspected source. If you do eat gluten, you will continue to have headaches, and that is the tip of the iceberg, because your health will continue to go downhill in many ways.
Get checked for thyroid disease, because autoimmune thyroid disease is one of the many autoimmune diseases you are at risk for if you are not on a gluten-free diet successfully.
You might get relief from your headaches from taking L-argimine 2000 mg a day, glutamine powder supplement, a probiotic like PB8 or Align, and magnesium 500 mg in the morning, and at night, calcium 500 mg and vitamin D 2000 IU. You need to eat very healthy with lots of fruits, vegetables, and lean meat, poultry and fish. Nuts are good for you if you are not allergic to nuts.
Has anyone ever put you on any anti-acids if so I recommend getting off as this will interfere with absorption of B12 and iron.
Beyond celiacs has anyone ever looked into endometriosis that too can cause horrible migraines. Also have you kept a food diary to see what else besides gluten trigger migraines-- I cannot have dairy, any artificial sweetener, nitrates.nitrites (processed meat), msg (which is typically made from gluten), certain nuts, high fructose corn syrup, and as far as inactive ingredients in meds (outside of the food ones mentioned liked dairy) I cannot have talc, sodium laural(th) sulfate-- this is also found in most soaps, detergents, and even supplements.
I hope this helps,
PS Definitely look into autoimmune thyroid disease.
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