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Help, please, with blood test interpretation


Deades

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Deades Contributor

Quick back story:. I was diagnosed June 1 after having an endoscope looking for a stomach ulcer.  It was totally by chance the celiac was discovered.  My regular doctor prescribed the scope but did not do the test.  Another doctor in the practice did it and told me I had celiac.  I had my kids tested before they went back to college (both are negative) and my doctor asked my daughter why she thought she had celiac.  She said because her mother had it and then he asked who told me I had celiac.  He doesn't think I do.  

Results of the scope:. Mild chronic duodenitis with mild to moderate villus blunting compatible with changes related to celiac disease in the appropriate clinical and endoscopic setting.  No dysplasia or malignancy identified.

i had no physical symptoms but malabsorption issues.  My iron level was 37 and ferritin was 10.2 from blood work November 2016.

just got results from blood work done September.  Iron level is now 147 and ferritin is 86.1. 

I am concluding that I do have celiac.  What do you think?  I go to my doctor on Wednesday, Sept. 13 to talk with him.

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Gluten-free-01 Enthusiast

Well, if I were in your situation, I would ignore the doctor who says you don’t have celiac and trust the other one who says you do. There are doctors who just don’t get it! As for the results of your endoscopy, it's very unlikely that you don’t have celiac, in my opinion. If I understand it correctly, your iron and ferritin levels went up thanks to the gluten free diet, right?  

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Deades Contributor

Yes, iron and ferritin went up significantly.  Is it possible is set some gluten?

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Gluten-free-01 Enthusiast
14 minutes ago, Deades said:

Is it possible is set some gluten?

What do you mean? 

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Deades Contributor

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

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Ennis-TX Grand Master
21 minutes ago, Deades said:

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

Yeah, it will. The antibodies will flare in the background for weeks up to a month and damage your intestines from even the smallest crumb. Consistant abuse like this will keep damageing it and cause more health issues in the long run. We did not know about mine for years and I ended up with a secondary AI issues a whole list of food allergies, and I can not eat most foods now.    We had another member who ignored their celiac....long story short stuff went bad and they had emergency surgery after which ended up having to use a bag for the bathroom.  We had another member who got cancer and passed away.......I think someone else can link you the post to these. This is not a disease to joke or mess around with it is a life long commitment.  

PS there are plenty of gluten-free options for EVERYTHING now even hot pockets. Stick to gluten-free now and you can still eat them. I can not even consume those anymore due to my damage here is a fun list. https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

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Jmg Mentor
5 hours ago, Deades said:

I am concluding that I do have celiac.  What do you think?  I go to my doctor on Wednesday, Sept. 13 to talk with him.

I took a look at your other posts. I'll summarise for others reading. You didn't have the celiac blood tests but were diagnosed via an endoscopy. You also have anemia and osteoporosis I think?

Your doctor doesn't think you have it. Another doctor thinks you do. The questions you're asking suggest you're at least unsure and you seem to be asking for permission to break the gluten-free diet?

There are sadly no half measures. If you have celiac and have occasional gluten you're potentially opening yourself up to very serious health consequences. 

The answer is to either accept the celiac diagnosis and live accordingly or seek further testing. Which would mean a gluten challenge, blood tests and then perhaps a second endoscopy. Given the villous atrophy and apparent positive reaction to the gluten-free diet I think you should accept the current diagnosis but it's a decision only you can take!

Best of luck :)

 

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Gluten-free-01 Enthusiast
46 minutes ago, Deades said:

Well, since I don't have physical symptoms, only absorption issues, can I consume the occasional piece of pizza or dish of pasta without screwing up myself.  I guess I am asking if I will harm myself if I eat gluten on occasion.

I can only confirm all that has been said.

Yes, you will harm yourself if you do that. The absorption issues are physical symptoms! Please, try to learn a bit more about celiac.. this forum is a good source of info, for instance. The gluten free diet has to be strict - 100%. Cheating wouldn't pay off because the villi in your small intestine would never get a chance to heal and recover. The function of the villi is that they absorb nutrients - celiacs have damaged villi and that's why they can't absorb nutrients properly (this can result in iron deficiency/anemia by the way - as in your case). Once a celiac goes gluten free, their villi start to heal and this has a positive impact on the body as a whole.

There is a lot more you can learn about celiac - you don't have to read scientific research articles, but please do read basic info that is available.

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RMJ Mentor

Yes you will hurt yourself eating gluten even if you don't have symptoms, although I'd call malabsorption a symptom.  

Some doctors don't seem to think Celiac is real. A doctor I was seeing for something unrelated to celiac recommended a test where radioactivity could accumulate in my small intestine.  I asked if it would harm my intestine because I have celiac.  His response "You probably don't have that".  He said that with no evidence whatsoever.  I'm skinny so I actually look like what doctors think a typical celiac should look like.  I was able to respond, "well I just had a positive biopsy last week."  He never apologized.  I declined his test.

Thank goodness we can treat this disease ourselves by diet without needing a doctor to write a prescription.

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Deades Contributor

Thank you all.  You have confirmed with what I thought and I feel better going to my doctor on Wednesday.  

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    • trents
      I'll answer your second question first. The single best antibody test for monitoring celiac blood antibody levels is the tTG-IGA and it is very cost effective. For this reason, it is the most popular and often the only test ordered by physicians when checking for celiac disease. There are some people who actually do have celiac disease who will score negatives on this test anyway because of anomalies in their immune system but your wife is not one of them. So for her, the tTG-IGA should be sufficient. It is highly sensitive and highly specific for celiac disease. If your wife gets serious about eating gluten free and stays on a gluten free diet for the duration, she should experience healing in her villous lining, normalization in her antibody numbers and avoid reaching a celiac health crisis tipping point. I am attaching an article that will provide guidance for getting serious about gluten free living. It really is an advantage if all wheat products are taken out of the house and other household members adopt gluten free eating in order to avoid cross contamination and mistakes.  
    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
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      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
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