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Good News! A Real Diagnosis!

birdie22

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birdie22 Enthusiast
birdie22
Posted

Had my follow up appointment Friday with my primary care doc. Given the results of my 7 day gluten challenge (canker sore w/in 2 days, nausea, bloating, headache, heartburn, etc) she declared me (or at least listed on my take home paperwork) non-celiac gluten sensitive. Victory of sorts! At least it doesn't say IBS. She was also willing to do some more testing given that my deep muscle aches in my thighs and sometimes calves hasn't improved at all with diet change and vitamin supplements. She ran my aldosterone, parathyroid, calcium, full metabolic panel, sed rate. I'm particularly curious how my parathyroid and aldosterone tests will come back because gosh if either of those is off, I think that would be consistent with celiac (or at least that's what I gather from my reading).

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MitziG Enthusiast
MitziG
Posted

Congratulations! I know what a relief it is to have a dr at least acknowledge that there is a genuine physical cause for your illness! Sounds like your phys is an enlightened one! Hope you get more answers soon!

IrishHeart Veteran
IrishHeart
Posted

Holy smokes! You've got yourself one of the rarest breeds of doctor in the whole doctor kingdom!!

She knows what NCGI IS!! :) (and it's not a TV show)

And she knows what follow-up testing to do!!

You've hit the motherload! :blink:

Congrats!

I probably missed your other posts, but were you tested for celiac?

birdie22 Enthusiast
birdie22
Posted
  • Author

I probably missed your other posts, but were you tested for celiac?

Yep, blood test negative. She ran tTg, dgp, total IGA back in Oct. I went gluten-free in Nov.

IrishHeart Veteran
IrishHeart
Posted

Yep, blood test negative. She ran tTg, dgp, total IGA back in Oct. I went gluten-free in Nov.

I know you probably already know this, but blood testing NEG does not rule out Celiac.

I am seronegative and a celiac.

No matter, your symptom improvement is the key!!

Glad you feel better and your doctor is gluten-savvy! :)

rosetapper23 Explorer
rosetapper23
Posted

Just wanted to add to the conversation that you might wish to try something to alleviate the deep muscle aches/pains, which some (if not most) of us get. From my reading, muscle pain can be a result of low oxygenation of your body's cells (which can be caused by any number of things, but appears to be common in celiacs perhaps because of nutritional deficiencies). Anyway, the following has worked for a number of us:

Pour a small smoothie or some juice into a glass and add 1/2 teaspoon of organic flaxseed oil and 3/4 teaspoon of safflower oil (organic if you can find it, but it's hard to find, so non-organic is okay). Drink this once or twice a day. You'll notice right away that the muscle aches go away, but another wonderful effect is that you'll have more energy during workouts. I used to have terrible muscle pain from the time I was a little girl (I'm now 55), and it would take 3-4 days to recover from exercising. My muscles were always extremely painful after exercising. After starting to take this oil blend in my smoothie every morning, I've had ZERO lactic acid buildup in my muscles after workouts, and I've had absolutely NO muscle aches or pains whatsoever. It's a miracle!

I hope it works for you, too! Please let me know....

birdie22 Enthusiast
birdie22
Posted
  • Author

Thanks for the advice. My doc called today and my other tests were normal... PTH, CK, sed rate, CBC, chem panel. My ferritin is 43 (lower end of normal) and my calcium was high normal(10.1 and upper limit is 10.2). I had hoped that the mag and d3 would help with the aches. Now I need to find another solution.

I've also encouraged my mom to get tested. She has suffered from gerd depression fatigue to name a few.

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birdie22 Enthusiast
birdie22
Posted
  • Author

I know you probably already know this, but blood testing NEG does not rule out Celiac.

I am sero-neg and a celiac.

No matter, your symptom improvement is the key!!

Glad you feel better and your doctor is gluten-savvy! :)

Yes I did know that. The doc begrudgingly said she could refer me to a GI but didn't think it was necessary. Now that I've been gluten-free since Nov I don't think I'm willing to gluten challenge in order to be scoped.

IrishHeart Veteran
IrishHeart
Posted

Yes I did know that. The doc begrudgingly said she could refer me to a GI but didn't think it was necessary. Now that I've been gluten-free since Nov I don't think I'm willing to gluten challenge in order to be scoped.

I don't blame you one bit. I could never withstand a gluten challenge now.

Well, I am guessing you know what to do then. Stay off gluten and feel better and better!

I still have muscle/joint pain too and I hope for it to resolve more as I get well.

Similar to ROSETAPPER's advice, I have increased my EFAs with fish oil, flax oil etc. and hope for the best. Inflammation is the problem.

Best wishes to you!

birdie22 Enthusiast
birdie22
Posted
  • Author

Would flax seed be equivalent to flax oil? I've been putting ground flax into smoothies, sprinkled on gluten-free waffles spread with peanut butter, etc. I also decided to add back in my daily multivitamin in case the added iron would help. I had dropped it in favor of just doing D3, mag, and B12, and after some research revealed that some multis cause heartburn (one of my unimproved symptoms).

IrishHeart Veteran
IrishHeart
Posted

Would flax seed be equivalent to flax oil? I've been putting ground flax into smoothies, sprinkled on gluten-free waffles spread with peanut butter, etc. I also decided to add back in my daily multivitamin in case the added iron would help. I had dropped it in favor of just doing D3, mag, and B12, and after some research revealed that some multis cause heartburn (one of my unimproved symptoms).

Flax seed works! It helps with gut motility, too. :)

ROSETAPPER may have some other thoughts about this. She uses it in conjunction with the safflower oil (which I also do) and I sometimes use evening primrose oil caps.

Iron can cause stomach distress, heartburn and serious constipation. :( (it may not be the multi, but the added iron)

Honestly, unless you are iron deficient, it is my understanding that you do not need it. Same with B-12--are you B-12 anemic?

birdie22 Enthusiast
birdie22
Posted
  • Author

Flax seed works! It helps with gut motility, too. :)

ROSETAPPER may have some other thoughts about this. She uses it in conjunction with the safflower oil (which I also do) and I sometimes use evening primrose oil caps.

Iron can cause stomach distress, heartburn and serious constipation. :( (it may not be the multi, but the added iron)

Honestly, unless you are iron deficient, it is my understanding that you do not need it. Same with B-12--are you B-12 anemic?

Thanks for the additional food for thought. My iron is normal but ferritin is lower end of normal. My B12 hasn't been tested (that I can recall) but the doc thought it would be good for the buzzed/dizzy feeling and the tingling I had in the last 2 fingers of my right hand. I didn't take the B12 today since there's a small amount of it in the multi. My legs felt achy this morning and honestly after taking the multi it went away. Could be coincidence but something I'll track over the next few days.

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    • Colleen H
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