This Is Getting Difficult!

[atlas623]

I am a 26 year old female.

I just recently finished reading 4 books on gluten intolerance / celiac disease, along with reading plenty on the internet. I am pretty convinced I have celiac disease or that I am extremely intolerant to gluten & maybe yeast as well. Dairy too... but that's another issue.

So, here's the thing. I have no idea if I have celiac or not. I have most of the symptoms, but of course I know I can't tell without testing. Testing will take a long time, and I'm not sure if I can wait as this is getting really bad for me.

I've been having obvious symptoms pretty much around the time my son was born - my husband and I had an extremely bad time in our marriage right before my sons birth (I've read in my books that child birth / a stressful situation may worsen gluten conditions)

A little before I got pregnant, I also had symptoms but not as obvious. I have had 3 different skin conditions in 2 years. Pityriasis rosea, Perioral Dermatitis and Eczema. I have terrible sinus problems that keep getting worse regardless of medication, my muscles ache whenever I eat gluten, I get SO tired that I am barely function, I am forgetful, I am either constipated or have diarrhea, migraines and headaches are a daily thing for me, etc.

I "ignored" it and assumed I was just stressed out, but realize now it may be way more than that. I came upon Wheat Belly Total Health and went from there.

I don't know what to do. A friend of mine has Celiac so I know how the testing works. But as I said, I've already been trying to cut out gluten and feel so much better when I do. But I know if I cut it out completely, they would not be able to tell from the tests.

Should I just cut out the gluten completely and self-diagnose as gluten intolerant? Should I deal with the hassle of the tests? Has anyone just done without testing and cut it out on their own?

Any thoughts will be greatyle appreciated.

[cyclinglady]

A celiac blood screening is easy and can be done by any medical doctor. Do not worry about an endoscopy. You can cross that bridge later.

Self diagnosing? Here are the problems:

1) celiac disease is genetic. If you had a diagnosis, getting your kids and other family members tested is easy. You can have celiac disease even if you do not have symptoms.

2) without a dx, doctors are less likely to check out other issues like osteoporosis or other autoimmune disorders that often accompany celiac disease

3) although some folks have no choice but to go gluten free (exhausted the diagnosis process and are still sick or lack the resources) it is HARD to maintain a gluten-free diet when you are doubting that you really have it.

I hope this helps! I wish you well.

[nvsmom]

Do the tests first if you can.  You just need to wait long enough to get an appointment with your GP, and then a few more days for the test results to come back.

 

If you choose to do a gluten-free trial first, then you will need to resume eating gluten for 2 to 3 months and then go to the doctor.  Way more hassle - that could put you back into the holiday season!

 

Ask for these tests:

• ttG IgA and tTG IgG (tissues transglutaminase) ost common tests)
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer tests often better at picking up early celiac disease 
• EMA IgA (endomysial antibodies)  - similar to the tTG IgA but detects more advanced disease
• total serum IgA - a control test to make sure you are not low in IgA for testing
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests

Get as many tests done as possible.Keep eating gluten until they are done.

 

If all of the tests are negative, then you could request the biopsy.  If that is negative, then you can try the gluten-free diet for a good 6 months to see if it is non-celiac gluten sensitivity (NCGS).  Give the diet many months before you judge it's effectiveness though.  This isn't like an allergy where one starts to recover within hours.  Health improvements can take many many months.  I personally had improvements until I was gluten-free for two years.

 

Good luck!!

[atlas623]

  On 8/31/2015 at 4:54 PM, cyclinglady said:

A celiac blood screening is easy and can be done by any medical doctor. Do not worry about an endoscopy. You can cross that bridge later.

Self diagnosing? Here are the problems:

1) celiac disease is genetic. If you had a diagnosis, getting your kids and other family members tested is easy. You can have celiac disease even if you do not have symptoms.

2) without a dx, doctors are less likely to check out other issues like osteoporosis or other autoimmune disorders that often accompany celiac disease

3) although some folks have no choice but to go gluten free (exhausted the diagnosis process and are still sick or lack the resources) it is HARD to maintain a gluten-free diet when you are doubting that you really have it.

I hope this helps! I wish you well.

Thanks for your reply! I agree... it may be hard to steer completely clear of gluten if i'm doubting I have it.

How would they test my son for it as well if I did end up with it? Would it just be a blood test?

[atlas623]

  On 8/31/2015 at 5:39 PM, nvsmom said:

Do the tests first if you can.  You just need to wait long enough to get an appointment with your GP, and then a few more days for the test results to come back.

 

If you choose to do a gluten-free trial first, then you will need to resume eating gluten for 2 to 3 months and then go to the doctor.  Way more hassle - that could put you back into the holiday season!

 

Ask for these tests:

• ttG IgA and tTG IgG (tissues transglutaminase) ost common tests)
• DGP IgA and DGP IgG (deaminated gliadin peptides) - newer tests often better at picking up early celiac disease 
• EMA IgA (endomysial antibodies)  - similar to the tTG IgA but detects more advanced disease
• total serum IgA - a control test to make sure you are not low in IgA for testing
• AGA IgA and AGA IgG (anti-gliadin antibodies) - older and less reliable tests largely replaced by the DGP tests

Get as many tests done as possible.Keep eating gluten until they are done.

 

If all of the tests are negative, then you could request the biopsy.  If that is negative, then you can try the gluten-free diet for a good 6 months to see if it is non-celiac gluten sensitivity (NCGS).  Give the diet many months before you judge it's effectiveness though.  This isn't like an allergy where one starts to recover within hours.  Health improvements can take many many months.  I personally had improvements until I was gluten-free for two years.

 

Good luck!!

Thank you so much for the response! How do you think I should go in and ask for the tests? Should I just say I think I may have a gluten intolerance or Celiac? I'm a little worried she may just dismiss my thoughts.

And I've still been eating gluten lately, just VERY small amounts, like chocolate once a day or something. Is that enough to be in my system so that I don't have to do the 2 to 3 month thing?

[cyclinglady]

  On 8/31/2015 at 6:11 PM, atlas623 said:

Thanks for your reply! I agree... it may be hard to steer completely clear of gluten if i'm doubting I have it.

How would they test my son for it as well if I did end up with it? Would it just be a blood test?

Blood test and endoscopy (if needed).

[cyclinglady]

  On 8/31/2015 at 6:13 PM, atlas623 said:

Thank you so much for the response! How do you think I should go in and ask for the tests? Should I just say I think I may have a gluten intolerance or Celiac? I'm a little worried she may just dismiss my thoughts.

And I've still been eating gluten lately, just VERY small amounts, like chocolate once a day or something. Is that enough to be in my system so that I don't have to do the 2 to 3 month thing?

Not enough! You need a slice of bread or two a day for 8 to 12 weeks per the University of Chicago's celiac website (blood tests), but maybe less based on other researchers.

Oh, my hubby went gluten-free based on the poor advice from my allergist and his GP. It worked and he has been gluten-free for 14 years. But he will tell you that I have had WAY more support from medical, family, and friends. He refuses to do a challenge and I do not blame him. He would tell you to get the testing to make your life easier in the long run!

-- sorry, NVSMOM for butting in! --

[atlas623]

  On 8/31/2015 at 6:26 PM, cyclinglady said:

Not enough! You need a slice of bread or two a day for 8 to 12 weeks per the University of Chicago's celiac website (blood tests), but maybe less based on other researchers.

Oh, my hubby went gluten-free based on the poor advice from my allergist and his GP. It worked and he has been gluten-free for 14 years. But he will tell you that I have had WAY more support from medical, family, and friends. He refuses to do a challenge and I do not blame him. He would tell you to get the testing to make your life easier in the long run!

-- sorry, NVSMOM for butting in! --

Ahh! So I guess I'd still have to eat gluten for the next two to three months. Haha. Oh boy.

I think part of my problem is similar to that of your husbands - I don't have much support from my family at all. Everytime I try to talk about it it's just pushed aside like it's nothing. Kind of frustrating.

[nvsmom]

I agree with Cyclinglady (again   ).  If you are only eating trace amounts of gluten (in chocolate, soy sauce, or just crumbs in the butter) it may not be enough for accurate tests.

 

Ideally, if you can test now, do it.  If the tests are negative then you can retest after a gluten challenge of a few months (if you are up to it) or go gluten-free.  If money or insurance is an issue, I would wait the couple of months.

 

If you are eating a muffin here, and a few crackers or cookies there, it may be enough for accurate tests.  Adding the gluten challenge makes chances of getting an accurate result higher though.

 

It's a tough decision.