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Celiac Disease?

Corey W.
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Corey W. Newbie
Corey W.
Posted

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. 
 

image.webp.a7ac870dae5f08d3671d90fafe75b84b.webp

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.

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cyclinglady Grand Master
cyclinglady
Posted

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 Grand Master
Scott Adams
Posted

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. Newbie
Corey W.
Posted
  • Author
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. Newbie
Corey W.
Posted
  • Author
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 Veteran
GFinDC
Posted
(edited)

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 by GFinDC
cyclinglady Grand Master
cyclinglady
Posted

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

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Corey W. Newbie
Corey W.
Posted
  • Author
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 Veteran
GFinDC
Posted
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.

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    • trents
      Weakly positive DGP IgA

      By trents · Posted

      If your total IGA is low then the values for the other IGA tests cannot be trusted. They will be depressed. Celiacs who have the DQ2 gene typically are on the more sensitive side as opposed to those who only have the DQ8. But keep in mind that having either or both of those genes does not equate to having celiac disease as 40% of the general population have one or the other and only about 1% of the general population develops active celiac disease. Genetic typing can be used for ruling it out, however. Because of the low total IGA, symptoms and the possession of the DQ2 gene, my suggestion would be for you to go seriously gluten free for a few months and see if your symptoms improve. It may be the only way you can ascertain if you are gluten intolerant because of the low total IGA.
    • Cat M
      Weakly positive DGP IgA

      By Cat M · Posted

      Ah ok, I just saw didn’t even post the DGP IgA at all. 😫 I started with itching and hives Jan 2024, been taking a ton of meds and on Xolair and even that is not providing total relief. The other primary symptoms: intermittent but worsening abdominal pain, diarrhea and bloating. This summer I am just exhausted. I uploaded my 23andMe data to genetic lifehacks and discovered quite a few variations, including DQ2, MTHFR, VDR and I have always had very low ferritin, vitamin D and B12. I still think that mast cell disease makes the most sense, but latest labs show I am barely in range for thiamine, zinc and vitamin A, so the GI stuff feels more important to figure out than the hives right now. I did SIBO testing this morning. TTG IGA <2   0-3 is negative TTG IGG  3   0-5 is neg DGP IGA 21    20-30 is weak positive DGP IGG 4    0-19 is negative Although total IGA is not resulted, there is a footnote stating it was low and the reason they ran IGG.  
    • Scott Adams
      Positive TTG antibody and negative EMA antibody

      By Scott Adams · Posted

      This is an interesting case. A positive tissue transglutaminase (tTG) antibody with a negative endomysial antibody (EMA) and normal duodenal histology can present a diagnostic challenge, especially in an asymptomatic patient. While the absence of villous atrophy and negative EMA suggest that the likelihood of active celiac disease is low at this time, such serological discordance may still warrant monitoring. Some individuals may be in the early stages of celiac disease, often referred to as potential celiac disease, particularly if they carry the HLA-DQ2 or DQ8 haplotypes. HLA typing can be quite helpful in this situation; a negative result would virtually rule out celiac disease, whereas a positive result may justify periodic follow-up to monitor for evolving disease. The risk of progression to overt celiac disease is not well defined but appears to be higher in children, those with a family history, or those with autoimmune conditions. In this case, routine follow-up including repeat serology and consideration of symptoms or new risk factors over time would be a reasonable and cautious approach. For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:      
    • Scott Adams
      Old to diagnosis

      By Scott Adams · Posted

      Have you tried to start a gluten-free diet since your diagnosis in 2019?
    • trents
      Positive TTG antibody and negative EMA antibody

      By trents · Posted

      Welcome to celiac.com, @Wamedh Taj-Aldeen! Just curious, what is your relationship to the patient? Are you the attending physician? A medical student? A consulted physician? Was a total IGA test ordered? Some physicians are under the dated and mistaken impression that such is only necessary in young children. If total IGA is low, other IGA antibody numbers will be artificially depressed. By the way, it is not unusual to have a positive TTG-IGA and a negative EMA. Are the TTG-IGA numbers borderline high or unequivocally high? There are other diseases and medical conditions that can cause elevated TTG-IGA numbers besides celiac disease but when this is the case, the numbers are usually not dramatically elevated. It can also be the case that villous damage was patchy and affected areas were missed during the biopsy. Or, onset of celiac disease was very recent and villous atrophy has not yet progressed to the point of detectability.  We also have occasional anecdotal reports in this online community of positive antibody testing with negative histology, as you report. But we also know that gluten intolerance can manifest itself apart from enteropathy. It can damage other organ systems. Many celiacs are of the "silent" type, meaning there is an absence or a relative absence of symptoms until the disease has become advanced and there is significant damage to the villous lining or other organ systems. But to answer your questions: 1. I would definitely pursue a routine follow-up and recheck of the antibodies. And, I would order a complete celiac panel including total IGA and IGG stuff in say, six months. Sooner if symptoms manifest. 2. It is impossible to say what is the risk of the future development of over celiac disease. I refer you back to my #1 above concerning rechecking.  3. I would definitely pursue HLA DQ2/DQ8 typing as it can be used as a rule out for celiac disease, though not quite with 100% dependability. I hope my thoughts prove helpful to you.
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