Newbie Gluten Intolerance help..

[NewAdventure]

A couple of months ago my DR had me do a blood test to see if I had celiac disease.. while waiting for the results she had me go on a gluten free diet.. 4 weeks later I found out that I don’t have celiac disease but I do carry a gene for it.. also found out just in those 4 weeks ALOT of my issues (extreme tiredness, brain fog, nauseous, scared to drive at times because I was so out of it, pins and needles in my back, itchy skin, joint pain, headache, Extreme anxiety, hypersensitive, bladder infections, cramping, and the list goes on) that I have or have had throughout my 40+ years have gone away by just the gluten free diet.. here I am going on two months of gluten free.. I’m still having problems here and there but still trying to figure out how I’m still here and there getting glutend.. 

this is ALL a big learning curve for me and my family..  my husband for the most part is helpful in making sure that stuff from the grocery store is gluten free.. but still doesn’t understand about cross contamination, and how just even a little of gluten can cause me to end up with my headaches, extreme tiredness, get nauseated, hyposensitive, and anxiety, etc.. he thinks that I’m “over exaggerating” and “making up things”, But I’m truly not.. it scary when I have come in contact with gluten.. it’s even worse when my husband looks at me and says, “ I get tired too, and when I have problems I just deal with it”.

I understand and this is why I’m trying to figure out what triggers my problems and what to do when they occur.. I’ve been truly trying to figure out my problems for the past 2 years.. And the dr finally figured out my biggest culprit, GLUTEN.. 

I’m still learning about what does or doesn’t make me have these problems.. if it’s airborne gluten, if it’s just consuming gluten, if it’s my hair product, makeup products(I am sensitive to makeup, soaps, adhesives, etc too)

Boy, do I sound like a hot mess ?.

I need advice in help for a newbie and how to help my husband understanding how serious it is.. 

crazy thing is that he told my dr that he has seen a Major change since I’ve been on the diet.. 

anyway any and ALL advice would be wonderful in helping me with my new path of life.. ❤️

 

[cyclinglady]

2 hours ago, NewAdventure said:

A couple of months ago my DR had me do a blood test to see if I had celiac disease.. while waiting for the results she had me go on a gluten free diet.. 4 weeks later I found out that I don’t have celiac disease but I do carry a gene for it.. also found out just in those 4 weeks ALOT of my issues (extreme tiredness, brain fog, nauseous, scared to drive at times because I was so out of it, pins and needles in my back, itchy skin, joint pain, headache, Extreme anxiety, hypersensitive, bladder infections, cramping, and the list goes on) that I have or have had throughout my 40+ years have gone away by just the gluten free diet.. here I am going on two months of gluten free.. I’m still having problems here and there but still trying to figure out how I’m still here and there getting glutend.. 

this is ALL a big learning curve for me and my family..  my husband for the most part is helpful in making sure that stuff from the grocery store is gluten free.. but still doesn’t understand about cross contamination, and how just even a little of gluten can cause me to end up with my headaches, extreme tiredness, get nauseated, hyposensitive, and anxiety, etc.. he thinks that I’m “over exaggerating” and “making up things”, But I’m truly not.. it scary when I have come in contact with gluten.. it’s even worse when my husband looks at me and says, “ I get tired too, and when I have problems I just deal with it”.

I understand and this is why I’m trying to figure out what triggers my problems and what to do when they occur.. I’ve been truly trying to figure out my problems for the past 2 years.. And the dr finally figured out my biggest culprit, GLUTEN.. 

I’m still learning about what does or doesn’t make me have these problems.. if it’s airborne gluten, if it’s just consuming gluten, if it’s my hair product, makeup products(I am sensitive to makeup, soaps, adhesives, etc too)

Boy, do I sound like a hot mess ?.

I need advice in help for a newbie and how to help my husband understanding how serious it is.. 

crazy thing is that he told my dr that he has seen a Major change since I’ve been on the diet.. 

anyway any and ALL advice would be wonderful in helping me with my new path of life.. ❤️

 

Are you sure celiac disease was firmly ruled out?  Consider getting a second opinion.  Did you receive your test results?  Did you get the full celiac blood panel?  Did you know that some people do not test positive on the standard screening celiac disease test: the TTG?  Did you know some celiacs are seronegative?  Though I would think your doctor, if he or she had ordered an expensive genetic test, would have run the entire celiac blood panel.  

[NewAdventure]

My results were

tTg IgA 0.3      <=6.9 U/ml 

DHP IgA 2.1   <=6.9 U/ml

AgA IgA 1.1    <=6.9 U/ml

AgA IgG .9       <6.9 U/ml

total IgA 191      69-446 mg/dL 

In my DNA

hla-dqa1 was a -/-

hla-dqa2 was +/+

ATG16L1 was a +/- (IBS)

if any of this makes sense.. 

I’m wondering if a skin test would help in a better result.. 

i was reading up on an article on here that people with the watery blisters/wart looking bumps(sorry I’ve never had a dr look at them. So I’m not sure what they are truly called) may ulter the blood test.. 

all I really know is that since  I’ve been off of gluten, I have been REALLY sensitive to it.. I feel my symptoms ALOT more and it’s not fun.. 

Edited August 26, 2018 by NewAdventure

[tessa25]

Test results show normal ranges for each test. Can you include those?

[NewAdventure]

I’m not sure what you mean by can I show those?

[TrainInVain]

5 minutes ago, NewAdventure said:

I’m not sure what you mean by can I show those?

I think he means what the range is for each result. It would say something like 0-3 is normal 4-9 weak positive >10 positive or along those lines. Labs all have their own ranges.

[cyclinglady]

What are the lab ranges?  

What kind of doctor are you working with?  Celiac Disease blood tests help with a diagnosis, but only intestinal biopsies can confirm it.   Some people do not have access to an endoscopy for a variety of reasons (e.g. lack of insurance or long wait times).  In that case, the doctor might trial a gluten free diet and check antibodies again to see if they come down (without ranges, I can not tell of yours are elevated and I assume they are not).  

Those old AGA tests are not being used anymore  because they are not as accurate as the newer TTG or DGP tests.  I am assuming you typed “DHP” in error.  This explains the AGA test:

Open Original Shared Link

You should ask your doctor why he is using outdated tests, especially if you live in the US.  

About 30% or more of the population carries the celiac genes but only a very few go on to actually develop it.  The gene test is to help rule out celiac disease.   It can not diagnosis it.

You could see improvement on the gluten free diet because you either have celiac disease, Non-Celiac Gluten Sensitvity, or something like a FODMAP issue.  Just cutting out processed foods can make some people feel better. 

Sorry, but I think you should seek a second opinion.  A celiac or one with Non-Celiac Gluten Sensitivity must remain strictly gluten free for life.  It sounds like your husband is not convinced about your diagnosis.  Maybe that second opinion will help your husband realize what gluten can do to you.  Consider asking your doctor for a dietitian consult who is well-trained in dealing with celiacs and have your husband attend with you.  

 Some celiacs present with dermatitis herpetiformis (DH).  Since you did not describe it as the “rash from hell” where the itching and scratching keeps you up,  chances are you do not have it, but are dealing with another rash.  DH would be your worse and unbearable symptom.   But I am not a doctor.  You should consult with a dermatologist.  

My genes were never checked so I am have no information about genes, but the ATG16L1 is not for IBS but for IBD which is either Crohn’s or Ulcerative Colitis.  That should be investigated by a Gastroenterologist as both are very serious.  

Maybe I am not really understanding your situation.  I can only suggest seeking another medical opinion.  

Edited August 26, 2018 by cyclinglady

[NewAdventure]

Sorry the first person that responded to me asked what they tested. So I was just responding to that..

In my post I was asking for help in:

   *what everyone’s first year was like?

*how to explain your allergies/severety/cross tamination/how easy your triggers can act up & for how long to were your spouse understands..

*all the ends up helping a newbie to survive the first year.. (what you know now that you wish you knew when you first started, etc) ?

 

[GFinDC]

Maybe have the hubby look over this list of auto-immune diseases.  Celiac disease is one of them.  None of them are particularly fun to have.

Then again, maybe he should read this thread about what there is to love about celiac disease.

 

[NewAdventure]

GFinDC

That’s thread is perfect.. thank you so much ❤️

[GFinDC]

Well,  if you liked that one, here's another.

 

[NewAdventure]

17 hours ago, GFinDC said:

Well,  if you liked that one, here's another.

 

Even better.. I was laughing so hard and could relate to most of it.. 

thank you.. ❤️❤️❤️ I love this website because I don’t feel so alone... 

i hear stories and I feel like I’m the one writing them myself.. 

[GFinDC]

You sure aren't alone NA.  We all started the gluten-free diet at some point and knew diddly squat about it.  There is a lot to learn at first!  And plenty of mistakes to make! ?

I did learn eventually to keep my diet very simple during recovery.  The fewer ingredients in a food I eat the better IMHO.  Unless it is something I made myself, then I can go for more.

Something that also threw me was developing additional food intolerances along the way.  That made troubleshooting my gluten-free diet a lot more interesting.

Edited August 29, 2018 by GFinDC