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Positive or not?

kdods

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kdods Newbie
kdods
Posted

My story is a long one, so please bear with me:

42 years old; have 4 kids. My youngest was born 7 years ago, but after the birth of my 9 year-old, I started getting very sensitive to random drugs - allergic reaction to novocaine, benzocaine, lidocaine, robutussin and more. All out of the blue. Full body swelling, hives, etc. When I went into labor, they would not give me an epidural because of my allergies .. was a VERY difficult birth but my son was healthy and a gift, obviously.

I developed raynauds right after having him. About a year later, the inner part of my right leg went numb for 4 months. No one could find anything "wrong". I also had LOTS of aches and pains. I like to work out, but gosh - I was only exercising for 45-50 minutes 5-6 days a week, many people do much more. My chiro couldn't figure out why I kept hurting.

I am lactose intolerant and have always had a "bad stomach". You name it, I have it/have had it. Fatty stools, D/C, bloating, etc.

I got diagnosed hypothyroid 2 years ago and am managing with Nature Throid. My ferretin levels were 6 for 2 years and I had infusions last October. Oh - I digress - I didn't have periods for YEARS ... never thought much about it since I was having babies/breastfeeding for 8 years, but prior to that, I was super irregular. Like it was nonexistent.

I went gluten-free 4 years ago and suddenly my periods were back. I'd cheat here and there - like a bite or two max, but I was taking some in, nonetheless. I was 95% gluten-free at that point.

I tried doing a gluten challenge last year for 4 weeks and I was waking up 5x's/night, my eyes were puffy, my periods stopped and I couldn't do it anymore. My panel came back normal. 

I tested positive for one of the genes and a few other of the risky alleles, and my dr. thinks that since I feel so much better without gluten, that I have Celiac. I would love your thoughts on this - I don't know if I'm Celiac or just gluten sensitive.

Thank you in advance!

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cyclinglady Grand Master
cyclinglady
Posted
5 hours ago, kdods said:

My story is a long one, so please bear with me:

42 years old; have 4 kids. My youngest was born 7 years ago, but after the birth of my 9 year-old, I started getting very sensitive to random drugs - allergic reaction to novocaine, benzocaine, lidocaine, robutussin and more. All out of the blue. Full body swelling, hives, etc. When I went into labor, they would not give me an epidural because of my allergies .. was a VERY difficult birth but my son was healthy and a gift, obviously.

I developed raynauds right after having him. About a year later, the inner part of my right leg went numb for 4 months. No one could find anything "wrong". I also had LOTS of aches and pains. I like to work out, but gosh - I was only exercising for 45-50 minutes 5-6 days a week, many people do much more. My chiro couldn't figure out why I kept hurting.

I am lactose intolerant and have always had a "bad stomach". You name it, I have it/have had it. Fatty stools, D/C, bloating, etc.

I got diagnosed hypothyroid 2 years ago and am managing with Nature Throid. My ferretin levels were 6 for 2 years and I had infusions last October. Oh - I digress - I didn't have periods for YEARS ... never thought much about it since I was having babies/breastfeeding for 8 years, but prior to that, I was super irregular. Like it was nonexistent.

I went gluten-free 4 years ago and suddenly my periods were back. I'd cheat here and there - like a bite or two max, but I was taking some in, nonetheless. I was 95% gluten-free at that point.

I tried doing a gluten challenge last year for 4 weeks and I was waking up 5x's/night, my eyes were puffy, my periods stopped and I couldn't do it anymore. My panel came back normal. 

I tested positive for one of the genes and a few other of the risky alleles, and my dr. thinks that since I feel so much better without gluten, that I have Celiac. I would love your thoughts on this - I don't know if I'm Celiac or just gluten sensitive.

Thank you in advance!

Does it matter?  You felt better on a gluten free diet.  Consider pursuing a gluten challenge (8 to 12 weeks) under a GI’s care because it sounds like you are doubting the whole gluten free thing.  I can share that my hubby has no formal diagnosis but knows that gluten makes him sick.  He has been gluten free for 17 years (12 years longer than me].  What nut would persevere if they did not feel they were getting results?  

I wish you well! 

kdods Newbie
kdods
Posted
  • Author

Really appreciate your input. I know I feel BAD on gluten, so you are right - gluten-free is the only way to go for me. I guess I want to know if I do or do not have celiac, but adding it back into my diet last october even for 4 weeks was not good.

cyclinglady Grand Master
cyclinglady
Posted

Since you have so many hypersensitivity issues (google it), I would be concerned about your kids.  Get them tested for celiac disease if you see any signs.  They can develop it at any time.  My kid was tested 4 years ago (negative, complete panel).    Her doctor has standing lab orders for her to be retested this summer (she is gluten light now).  Autoimmune runs like crazy on both sides of our family and she has Raynauds too.  I mostly worry about a MS diagnosis which her Grandmother had.  I would hate for undiagnosed celiac disease to trigger MS, RA or Lupus.  

kdods Newbie
kdods
Posted
  • Author

Oh wow - I had no idea of the connection. Good to know - I should probably have them tested ...

notme Experienced
notme
Posted
On 4/24/2018 at 5:51 PM, kdods said:

Oh wow - I had no idea of the connection. Good to know - I should probably have them tested ...

yep, the lovely autoimmune gene.   my son got dx of type 1 diabetes at age 19, daughter got dx of r.a. at age 12.  pregnancy/childbirth was my trigger, as well.  i had no idea what celiac disease even *was* until the doc suggested i go gluten free.  of course, that made the blood tests negative, but g.i. doc told me to continue.  they are still reluctant to call it 'true' celiac, even though they could see the damage when they did the endoscopy!  since i started gaining weight almost immediately, she didn't want me to do a gluten challenge because i was horribly underweight.  that golden diagnosis is hard to obtain.  i guess they want to keep you sick and treating all the symptoms and side effects :( daughter, now 27, is gluten free, even though she tested neg.  son is 32 and does the paleo thang.  if you feel better, i figure, what's the difference?  just keep an eye on your kiddos... 

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