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Great Test Results!


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17 replies to this topic

#1 LauraB0927

 
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Posted 13 October 2012 - 02:51 PM

I was diagnosed in May 2012 and just recently went back for my 6 month-ish follow up - the doc decided to run my Celiac panel again while he tested for my chief complaint of fatigue and increasing joint pain. I expected my TTG (was originally 100) to drop down to about 60 which I would have been very happy with given that I've had a few common rookie mistakes along the way. But the results came back and my TTG level was 13! I was shocked!! This has given me more motivation than ever to get those levels to an even better place and it let me know that I'm doing something right which is such a relief....I am going to ask for a copy of my results because they said my IgG and IgA levels were still high, so I'll post them on here because I'm a bit confused on how to interpret them.

The other shocking result is that my iron levels were fine - which surprised me because I was almost positive that it was the culprit in my increasing fatigue. I battled lowered iron levels since 2004. My vitamin levels are fine, thyroid is fine, so I'm not sure what else it could be. Any suggestions? I'm going to be getting a bone density scan on 10/29 which could (hopefully not) be the cause of my joint pain, and then I guess we'll take it from there.

I wanted to thank everyone on the forum for their suggestions, advice, tips, and unwavering support, not just for me but for all coming on here looking for some answers. It helped me so much and I completely attribute my healing to this site. I don't think it would have happened otherwise. Best wishes to everyone!!!
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

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#2 shadowicewolf

 
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Posted 13 October 2012 - 03:25 PM

isn't 13 a good level? I thought the scale was 1-20 was normal...
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#3 nvsmom

 
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Posted 13 October 2012 - 06:14 PM

That's great. Congrats on getting it down to 13! That number reflects a great effort to stay gluten-free... very nice. :)

I know you said your TSH is normal, but did they check your free T4's or for TPO Ab? I ask because I've had my thyroid checked every 5 years or so over the last 15 because I suspected a thyroid problem. I was tired, always cold, and my hair was thinning. My doctors always told me my TSH was normal but it was varying wildly from 6 to 4 to 2 to 13 (range was 0.-6). They finally treated me when it hit 13 but in hindsight, I'm pretty sure I had hashimoto's hypothyroidism. It's something to check.

Best wishes. :)
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#4 LauraB0927

 
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Posted 13 October 2012 - 07:43 PM

isn't 13 a good level? I thought the scale was 1-20 was normal...


I asked the same thing too - apparently every lab has varying levels depending on the sensitivity, but the ranges are usually pretty close - at my doctor's lab anything above 5 is abnormal, so there's still a bit to go.
  • 0



"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#5 GottaSki

 
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Posted 13 October 2012 - 07:43 PM

Congratulations Laura!

That reduction in less then six months is fantastic. I'm sure by the time your annual check runs around all your antibodies will be at good levels.

I am concerned to hear about your increase joint pain and fatigue. The fatigue can be a matter of your body using energy to heal - fatigue can take longer than most symptoms to improve. Did you have fatigue prior to diagnosis?

Same thing...did you have joint pain before diagnosis? If it is new or much worse than prior to dx, I'd guess there are other food intolerances. Am I remembering correctly that you are Paleo and have already removed grains? Sometimes when we change our foods we increase the amounts of other foods that may bother us. For joint pain - I'd make sure you aren't reacting to an increase of Nightshades &/or Legumes. I almost didn't want to suggest this because you have done such a great job of removing foods to improve, but thought I'd better throw it out there.

Best wishes for continued healing every day :)
  • 1

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 LauraB0927

 
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Posted 13 October 2012 - 07:46 PM

That's great. Congrats on getting it down to 13! That number reflects a great effort to stay gluten-free... very nice. :)

I know you said your TSH is normal, but did they check your free T4's or for TPO Ab? I ask because I've had my thyroid checked every 5 years or so over the last 15 because I suspected a thyroid problem. I was tired, always cold, and my hair was thinning. My doctors always told me my TSH was normal but it was varying wildly from 6 to 4 to 2 to 13 (range was 0.-6). They finally treated me when it hit 13 but in hindsight, I'm pretty sure I had hashimoto's hypothyroidism. It's something to check.

Best wishes. :)


Thank you so much! Its kind of hard for my friends to understand, but I know people on here will definitely appreciate the amount of effort that goes into eating gluten free. I'm not sure what thyroid tests they ran, but hopefully when I ask for all the copies of my blood work I can see whether or not they tested for it. I will definitely make sure I ask them to run the thyroid test you mentioned. I too am tired, have very thin hair, and am always cold (I also have Raynauds which turns my hands blue even in air conditioning). Not sure if I should start seeing a rheumatologist to see if I have any other autoimmune stuff going on. Thank you!!
  • 0



"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#7 LauraB0927

 
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Posted 13 October 2012 - 07:54 PM

Congratulations Laura!

That reduction in less then six months is fantastic. I'm sure by the time your annual check runs around all your antibodies will be at good levels.

I am concerned to hear about your increase joint pain and fatigue. The fatigue can be a matter of your body using energy to heal - fatigue can take longer than most symptoms to improve. Did you have fatigue prior to diagnosis?

Same thing...did you have joint pain before diagnosis? If it is new or much worse than prior to dx, I'd guess there are other food intolerances. Am I remembering correctly that you are Paleo and have already removed grains? Sometimes when we change our foods we increase the amounts of other foods that may bother us. For joint pain - I'd make sure you aren't reacting to an increase of Nightshades &/or Legumes. I almost didn't want to suggest this because you have done such a great job of removing foods to improve, but thought I'd better throw it out there.

Best wishes for continued healing every day :)


Thank you Lisa!! I always had some level of fatigue just due to my chronic low iron levels, but the fatigue definitely got worse over the last month and a half - I'm falling asleep at work and although everyone is very understanding of my issue, I cant keep doing it. I never really had joint pain before, and its not terrible, but its like dull aching constantly, even down to my fingers. I can still complete day to day tasks but its pretty uncomfortable. I am mostly on the primal diet (except for a few treats here and there) but I do still eat some nightshades (potatoes) and legumes (peanuts in a snack). I will cut them out for a couple weeks and see if that helps. Thank you for throwing that idea out there! I'd rather correct this by avoiding foods instead of being on a bunch of meds, unless I really need them. I'm 28 and shouldn't have osteoarthritis, but with this crazy disease you never know. I'm not surprised by anything anymore. Again, thank you so much!!
  • 0



"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#8 shadowicewolf

 
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Posted 13 October 2012 - 07:58 PM

Ah well that explains it. Well, that is good news then :)
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#9 GottaSki

 
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Posted 13 October 2012 - 08:26 PM

I can tell you that my reaction to many legumes is becoming extremely sleepy/tired within the hour of ingestion. Peas are like sleeping pills for me - beans are a slightly less reaction, but still make me very tired. Peanuts made me tired, cranky followed by weepy! Some legumes also caused joint pain within a day of ingestion.

Food can do very strange things in our damaged digestive systems. You've already successfully removed many foods that cause similar reactions - the foods you removed are all high in lectins - as are nightshades and legumes. Maybe remove nightshades and legumes for a week and then trial each food item (not group) at least three days apart.

And I wouldn't rule out thyroid or other AI yet. Could be another piece of the puzzle.
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#10 LauraB0927

 
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Posted 13 October 2012 - 08:54 PM

I can tell you that my reaction to many legumes is becoming extremely sleepy/tired within the hour of ingestion. Peas are like sleeping pills for me - beans are a slightly less reaction, but still make me very tired. Peanuts made me tired, cranky followed by weepy! Some legumes also caused joint pain within a day of ingestion.

Food can do very strange things in our damaged digestive systems. You've already successfully removed many foods that cause similar reactions - the foods you removed are all high in lectins - as are nightshades and legumes. Maybe remove nightshades and legumes for a week and then trial each food item (not group) at least three days apart.

And I wouldn't rule out thyroid or other AI yet. Could be another piece of the puzzle.


I think you make a great point, Lisa - when I read your post I started thinking of when/how often I ate nightshades/legumes. When I started the primal diet, I was strict and hardcore about it for a month and then as the food started running out in the fridge (I work full time and am in school so I have limited time to food shop), I started resorting to things like potatoes and peanuts cause they were available. (I looked at the list of nightshades and legumes online and I really only eat those two things that could potentially be a culprit). After I started sneaking other things in is when I started to feel this way. So, as of tomorrow - no nightshades or legumes and we'll see what happens! I'm guessing if I have an intolerance to them I may start feeling some relief in about a week or so? How long before I should start working them back in to see if the intolerance is there? Thanks so much again for your help..
  • 0



"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#11 GottaSki

 
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Posted 14 October 2012 - 06:38 AM

How long before I should start working them back in to see if the intolerance is there?

I read a great deal about elimination diets before I undertook mine. There is conflicting information about the length of time to remove food. Suggestions ranged from one week to one month. I went three weeks before I started to trial foods, but I was eliminating so many foods I think my body needed a bit longer to detox. Since you've removed so many of the items already, I'd say a week should be good IF you find symptoms improving...maybe longer if you are not improving.

The other factor of elimination trials that gets a variety of suggestions is whether you keep items that you don't have a reaction to. For me, I decided that I would trial each individual food separately with 3 days to 1 week between trials. Obviously if I had a reaction the food was removed. If I had no reaction I still removed it for the time I was trialing other foods - went back to my safe/base foods so that each food was trialed with an even playing field.

Good luck! Oh, don't forget to check spices for nightshades. You need to remove all peppers with the exception of peppercorns - black pepper is fine. Paprika is also a nightshade. I had the biggest reaction to bell peppers, but similar reactions to chili peppers, cayenne and paprika.

Here is what I removed:

Legumes: Soy, Peas, Beans, Peanuts
Nightshades: Tomato, Potato (sweet potato/yams are fine) and all Peppers
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#12 LauraB0927

 
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Posted 14 October 2012 - 08:07 AM

You need to remove all peppers with the exception of peppercorns - black pepper is fine. Paprika is also a nightshade. I had the biggest reaction to bell peppers, but similar reactions to chili peppers, cayenne and paprika.


Its funny that you mention bell peppers - I never really ate them but after my diagnosis started eating them as a snack with gluten free ranch dressing. I noticed that they made me burp A LOT for hours after I ate a couple slices, much more than any other food that I was eating. I'm wondering if that could be my first indication that I'm possibly intolerant to them?
  • 0



"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#13 GottaSki

 
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Posted 14 October 2012 - 08:20 AM

Its funny that you mention bell peppers - I never really ate them but after my diagnosis started eating them as a snack with gluten free ranch dressing. I noticed that they made me burp A LOT for hours after I ate a couple slices, much more than any other food that I was eating. I'm wondering if that could be my first indication that I'm possibly intolerant to them?

I too ate a lot more red, yellow and orange bell pepper once gluten-free - they added such nice bright colors to my food. When I trialed them - I had been joint pain free for weeks and had crippling paint within hours of trialing them. In fact bell pepper changed the way I trialed foods...I started by eating the item being challenged for breakfast, lunch and dinner on the trial day. Bell pepper convinced me to change all trials to late afternoon or dinner so that my whole day wasn't ruined.

The reason I mentioned that changing your diet could have you eating more of other things that may cause problems is this. My go-to quick lunch that I ate several times a week upon removing gluten was: Quinoa with red bell peppers and peas - and a side of peanuts! Turns out I am intolerant of all of them - no wonder I was in pain and ready to fall asleep at my desk.

It is awful when beautiful, healthy, whole foods bite you back - but always great to find out another piece of the puzzle ;)
  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#14 LauraB0927

 
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Posted 14 October 2012 - 08:55 AM

I too ate a lot more red, yellow and orange bell pepper once gluten-free - they added such nice bright colors to my food. When I trialed them - I had been joint pain free for weeks and had crippling paint within hours of trialing them. In fact bell pepper changed the way I trialed foods...I started by eating the item being challenged for breakfast, lunch and dinner on the trial day. Bell pepper convinced me to change all trials to late afternoon or dinner so that my whole day wasn't ruined.

The reason I mentioned that changing your diet could have you eating more of other things that may cause problems is this. My go-to quick lunch that I ate several times a week upon removing gluten was: Quinoa with red bell peppers and peas - and a side of peanuts! Turns out I am intolerant of all of them - no wonder I was in pain and ready to fall asleep at my desk.

It is awful when beautiful, healthy, whole foods bite you back - but always great to find out another piece of the puzzle ;)


Yes it does stink when you think you're having nice whole foods that are great for you - but they might not be! Is quinoa a nightshade or legume? I hope not! I LOVE quinoa!!!!!! I make it with chicken broth instead of water which gives it a great flavor and substitutes my love for total carb foods like rice and pasta. I hope I can still eat it!
  • 0



"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient

#15 mushroom

 
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Posted 14 October 2012 - 08:58 AM

If your body likes quinoa, you can have it :D
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"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

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Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

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