Celiac Disease?

[Corey W.]

Good morning forum. I have really enjoyed reading all of the different testimonies from various threads posted here. Thank you for sharing your journey. Over the past 2.5 years I’ve had several bouts with fatigue. Early on it would last for a few days and eventually resolve itself. But last fall it got so bad that I had to take some time off work. The fatigue was just unbearable....many days of dragging myself around. I was so fatigued I could hardly sleep. Then the weight loss started. I went from 175 to 140 in about 4 months! I thought I was dying....then the anxiety started. I also had some terrible nagging pain under my right ribs. 
 

My GP wanted to put me on anti-depressant meds. I refused. I knew something else was going on. I changed GPs and had a full panel blood work done. I tested positive DLQ2 but negative DLQ8. 
 

my IgG reading was high as well. I also tested to have allergies to all grains. I’ve always loved bread and pasta but now I’m wondering if this could be celiac disease or just gluten intolerance. I have an appointment with my Gastro next week. I’ve been trying to eat Whole Foods for about 2 weeks now. My energy is still low and I still have pain off and on under my right ribs. My blood work also showed low vitamin D and magnesium levels. All of my clothes are falling off of me. I continue to pray and thank God for my healing. I know I need to be patient and allow my body to recover. I’ve been eating fresh fish and salads for dinner. I’m really trying to avoid anything hazardous. Any words of encouragement would be appreciated. Thanks in advance.

[cyclinglady]

No time for me to respond well, but please, if you are going to a see a GI,  make sure you are consuming gluten daily.  All celiac disease testing requires you to be on a full gluten diet.  

[Scott Adams]

Were you on a gluten-free diet before taking the blood test? If so, that may have caused the DGP test to be negative.

At this point you should still be eating gluten daily until all tests are completed. If it’s too difficult to do this then then the current results may be enough for you to stay in a lifelong gluten-free diet. Going this route may exclude you from follow up tests, but not having a formal diagnosis will make it easier, and cheaper, to get private health or life insurance.

[Corey W.]

2 hours ago, cyclinglady said:

No time for me to respond well, but please, if you are going to a see a GI,  make sure you are consuming gluten daily.  All celiac disease testing requires you to be on a full gluten diet.  

Thank you for your response...I’m really sick of feeling bad....my Primary told me to stop eating gluten and stick to a strict Whole Foods diet which I have started doing. I made the appointment with the gastro on my own. I don’t have a endoscopy scheduled yet but I will see what my gastro says. 

[Corey W.]

1 hour ago, Scott Adams said:

Were you on a gluten-free diet before taking the blood test? If so, that may have caused the DGP test to be negative.

At this point you should still be eating gluten daily until all tests are completed. If it’s too difficult to do this then then the current results may be enough for you to stay in a lifelong gluten-free diet. Going this route may exclude you from follow up tests, but not having a formal diagnosis will make it easier, and cheaper, to get private health or life insurance.

Thanks Scott!!! If cutting gluten out of my diet means I will feel better I’m all for it. I’m just ready to get my health back to where it was. At 48 years old it was hard to believe something like this could seemingly come out of the blue! My sister and my Mom are both gluten intolerant. I’m not exactly sure what the differences are between GIT and Celiac disease.

[GFinDC]

Hi Corey,

Gluten intolerance is when a person has a bad reaction to eating gluten containing foods but no testing shows celiac disease.  They share some GI symptoms but gluten intolerance does not cause damage to the small intestine lining like celiac disease does.  There are actually more people with gluten intolerance than there are people with celiac disease.  Celiac disease has a genetic component so it tends to run in families.  It wouldn't be a bad idea for your relates to get tested again for celiac disease.  It can develop / show up at any time.

Edited May 27, 2020 by GFinDC

[cyclinglady]

I am sorry that your GP does not know about celiac disease or what is required for testing.  With Dr. Google, there really is no excuse anymore.  Celiac disease is an autoimmune disorder like lupus or rheumatoid arthritis.  The difference is that the trigger is known— gluten.  Damage is done to the small intestine and can be systemic as well.  A gluten intolerance or sensitivity can produce symptoms but does not cause physical gut damage.  

An allergy to grains is rare.  You would need an EPI pen to prevent anaphylaxis.  However, maybe it was a IgG test.  The problem is that Immunoglobulin G remembers bad guys.  Like it remembers that you had the chicken pox or a cold virus strain.  If you eat grain, your IgG is going  to remember that!  The American Allergist groups say these tests are valid 50% of the time.  Consider seeing a board certified allergist for testing.  

I have a firm diagnosis, however, my husband does not.  He went gluten free some 20 years ago based on the poor advice of his GP and my allergist.  The diet worked though.  But to get tested now would be difficult.  He would mean making himself sick.  Most report that going back on gluten to get tested is way worse.  He will tell you that I get more support from family, friends and medical with my diagnosis.  The other advantage is family testing.  Our daughter is screened every few years, because celiac disease can be asymptomatic and first degree relatives have a 44% chance of having celiac disease per a recent Mayo Clinic study.   Our insurance never hesitates to test her.    Finally, the diet is hard.  It takes time to master (cross contamination).   If you have any doubts, it might be even hard to stick with the diet.  

Get that GI appointment.  Be sure to let them know that you would have to get back on gluten for further testing (no need to waster time and money).    Make sure they rule out other things like gallbladder disease.

As far as life insurance, what Scott said is true.  But you are 48 and I am pretty sure you are not in the market for life insurance.  Health insurance?  You can not be denied based on the American Healthcare Act.  That worry is a thing of the past.  With this pandemic, the ACT (or some version of it) is here to stay.  

Your best defense is to research.  I am glad you are feeling a bit better.  Learn more about that Anti-gliadin test (which is not used anymore to test for celiac disease).  Make sure you are not Immunoglobulin A deficient which could explain why the DGP or TGG tests were negative (or know that some 10% of celiacs are seronegative).  

https://www.verywellhealth.com/what-is-the-aga-igg-blood-test-562558

[Corey W.]

4 hours ago, GFinDC said:

Hi Corey,

Gluten intolerance is when a person has a bad reaction to eating gluten containing foods but no testing shows celiac disease.  They share some GI symptoms but gluten intolerance does not cause damage to the small intestine lining like celiac disease does.  There are actually more people with gluten intolerance than there are people with celiac disease.  Celiac disease has a genetic component so it tends to run in families.  It wouldn't be a bad idea for your relates to get tested again for celiac disease.  It can develop up at any time.

Thank you so much.

[GFinDC]

On 5/25/2020 at 10:23 PM, Corey W. said:

Thank you so much.

You are welcome Corey.  I forgot to mention, low vitamin D is reported fairly often by forum members.  I had it for years myself.  You might feel better taking a 5000 IU supplement daily for a while.  But get your doctor to approve.  I take NatureMade as it is tested and does contain the amounts listed on the label.  Not all vitamins do.  You can look up vitamin ratings on https://labdoor.com/rankings/vitamin-d

Some boron might be a good supplement to take also.  Boron and vitamin D work together with calcium.  Vitamin D has a longer half-life in the body if you have enough boron.  So it may help you recover your vitamin D levels quicker.  I can tell you being low on vitamin D can have a major effect on your health and energy levels.