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Do I Really Need To Go gluten-free?

im1dermike

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im1dermike Newbie
im1dermike
Posted

Starting probably 3-5 years ago, every time I'd drink a single beer, I would get tired, feel "run down", and, it sounds strange, but it was almost like I could feel my stomach pulse.  These were the only symptoms I had so, when trying to self diagnose, I ignored Celiac's disease because I never noticed an issue when consuming anything else.

 

Fast forward to a few weeks ago. I had been abnormally tired for over a week so I went to the doctor.  He took blood and said I test positive for a number of tests in the Celiac screening.  FWIW, the results were as follows:

  • DEAMIDATED GLIADIN ABS, IGA - 18 (Negative)
  • DEAMIDATED GLIADIN ABS, IGG - 11 (Negative)
  • T-TRANSGLUTAMINASE (TTG) IGA - 6 (Weak positive)
  • T-TRANSGLUTAMINASE (TTG) IGG - 25 (Positive)
  • IMMUNOGLOBULIN A, QN, SERUM - 120 (Negative)

So my doctor (a general physician) said I should go on a gluten-free diet for a month and see how I react.  I've been on this diet for a week and, while I can do the month, I'm just not sure if this is the correct course of action. 

 

While I have no doubt I could stick to a gluten-free diet, there's no arguing it takes a lot of effort, is inconvenient, expensive, etc.  I don't want to end up not having any issues of feeling "run down" this month of a gluten-free diet, conclude that I must stay gluten-free, and have the real issue be that beer is simply the only thing I can't tolerate.

 

Hoping to get some feedback on my situation.  Thanks in advance.

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kareng Grand Master
kareng
Posted

Here is some info for you and the doctor about the proper way to diagnose celiac disease. You need to continue to eat gluten until you have had all the tests.

Open Original Shared Link

SMRI Collaborator
SMRI
Posted

I would agree--before you go gluten-free, schedule an endoscope to verify--and get the gene testing done.  With mixed lab results like that, the scope will help confirm your diagnosis either way.

im1dermike Newbie
im1dermike
Posted
  • Author

Thanks for the reply, kareng and SMRI.  This is why general physicans frustrate me...

 

I'm assuming a gastroenterologist is the specialist who would conduct the endoscopic biopsy and gene test?

kareng Grand Master
kareng
Posted

Thanks for the reply, kareng and SMRI.  This is why general physicans frustrate me...

 

I'm assuming a gastroenterologist is the specialist who would conduct the endoscopic biopsy and gene test?

Any doc could order a Celiac gene test but you would want a GI for the endo. They may want to do the other end, too ( colonoscopy) at the same time. Checking for other issues. Make sure your GI will do at least 6 biopsies. With your low numbers, you may be catching The Celiac at the beginning stages and not have a lot of damage.

Another option might be to continue to eat gluten and re- blood test in 6 months. The numbers should go up.

nvsmom Community Regular
nvsmom
Posted

Beer was always one of the worst for me - stomachaches and bloating which I attributed to the carbonation.   :rolleyes:   Fatigue is a pretty common celiac disease symptom.  What are your other symptoms?  There are many, Open Original Shared Link, and so many of them are not related to the gut.  I was pleasantly surprised when my plantar fasciitis went away along with migraines, hair loss, runny nose, and fatigue improved. I ask because you sound a bit disbelieving that it celiac disease could cause just your few symptoms.  ....Some people have no symptoms and others only a few, although it seems the longer the disease is ignored, the more obvious symptoms become.

 

Your Immunoglobulin A (IgA) says negative at 120.  That is a control test that is run when looking for celiac disease because 1 in every 20 celiacs is deficient in IgA and that will usually cause false negatives in any IgA based tests (DGP IgA and tTG IgA). Do you know the range of the IgA test?  I was wondering if negative means you are in the normal range or below it - I'm guessing you are in range but that is something to check as it could cause low tTG IgA and negative DGP IgA numbers.

 

The tTG tests are pretty good tests.  The ttG IgA is thought to have a specificity of 91-99% (I often see 95% cited)  which means that out of 100 positive tests, 1 to 9 (with an average of 5) will be caused by something other than celiac disease.  See this report for more info: Open Original Shared Link  A weak positive tTG IgA can be caused by diabetes, chronic liver disease, thyroiditis, crohn's, colitis, and a serious infection, but 95% of the time it's caused by celiac disease.  The tTG IgG also has a specificity of 95% as seen here: Open Original Shared Link  You have a positive tTG IgG, and I'm guessing that it is about 5 times above the normal limit (of 4?).  If that is true, it's most likely celiac disease.  False positives usually only occur with a weak positive, and not in the overwhelmingly positive.  KWIM?  :(

 

Do you know the ranges of the DGP tests?  I am guessing that the upper range is 20 and that your DGP IgA is close to being positive.  As kareng said, if you continue to eat gluten your numbers will probably go up, but that also means that you have damaged your body more - something to keep in mind.

 

If you do go in for the endoscopic biopsy, keep in mind that it can miss up to 1 in 5 celiacs so even if you have the test done, there is a chance of a false negative.  Get as many samples done as possible (6+) to try to avoid that.  You'll need to be eating gluten in the 2-4 weeks prior to the procedure for optimal accuracy.

 

If you can't have the biospy, or it ends up negative, try the diet for 6 months and see how you do.  One month really isn't long enough for recovery to begin in most people, and some even feel worse in the first few weeks.  You really need a few months gluten-free to evaluate you health long term.

 

Good luck!  Testing is one of the most frustrating parts of this disease. Hang in there.

SMRI Collaborator
SMRI
Posted

Thanks for the reply, kareng and SMRI.  This is why general physicans frustrate me...

 

I'm assuming a gastroenterologist is the specialist who would conduct the endoscopic biopsy and gene test?

 

You have to look at your general physician for what his/her role is in your care.  They are there for your basic care, physicals, minor injuries/illnesses, initial testing, etc. but then they are to refer you on if you need a specialist.  They are there to coordinate your care, but not to treat everything.  My daughter has a team of 5 or so doctors outside of her primary.  She sees her specialists as needed but her primary is the one that is the center of the wheel keeping tabs on everything.  While she knows a lot about various conditions, she isn't an expert on everything.  Once you are diagnosed with Celiac or whatever, your next step should be to see a specialist.  They deal with the ins and outs of the disease and should be on top of the latest information of how to treat the disease.  Think of it this way, you could go to a dermatologist to deliver your baby, she's a doctor, probably had an OB rotation, technically could do the delivery, but why would you?  A GI is good, but you want a GI that specializes in Celiacs.

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im1dermike Newbie
im1dermike
Posted
  • Author

Thanks for all the helpful replies and information.  I've scheduled an appointment with a gastroenterologist to discuss the situation.  My wife is 36 weks pregnant so hopefully I'm able to proceed with all the tests, etc. without any issue. :)

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