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Difficulty being diagnosed with celiac disease?

Sambozzi
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Sambozzi Newbie
Sambozzi
Posted

I’ve had a bad relationship with gluten my entire life. I had terrible gastrointestinal issues as a child when not as much was known about celiac disease. After many tests and doctors scratching their heads, my mom finally took me to a natural doctor who suggested I stop eating wheat. My mom was perplexed when most of my symptoms went away fairly quickly when I was switched off wheat. But in high school I went back to pretty much eating what I wanted, but had no idea I was slowly getting sicker and sicker. 
 

Fast forward to college and I got cholera on a trip to Haiti and it completely destroyed my gut. Suddenly I was having reproductive issues, respiratory issues, gastrointestinal issues, thyroid issues. A doctor mentioned trying a gluten free diet and I was desperate to get better so I jumped right in. Well, most everything went right into remission, I lost 60 lbs, and I suddenly had a much better quality of life. However, I noticed that anytime I snuck anything with gluten my reaction would get worse and worse. 
 

Now to today, I now have a severe reaction to gluten (even from cross contamination) anytime I am exposed. My GP thinks I definitely have celiac disease, but because of how severe my reactions are, she doesn’t want to put me through eating gluten to be officially diagnosed because I would not be able to handle it. She basically said that the only solution is eating gluten free anyways, so just keep doing what I’m doing. 
 

My question is, how important is an official diagnosis? Should I put myself through the diagnosis process to know for sure that it is celiac disease when I know I’ll get severely ill? Is it okay to assume it is celiacs? Is there anything out there that is similar to celiacs that I should be tested for (that doesn’t involve eating gluten)? 

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trents Grand Master
trents
Posted

Listening to your symptoms and your symptomatic experience with being off and on with gluten, I have no doubt that you have celiac disease. You may also find that other foods like oats and dairy cause similar symptoms as these two non-gluten foods not infrequently cause similar gut inflammation as gluten in the celiac population.

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knitty kitty Grand Master
knitty kitty
Posted

Welcome to the forum,@Sambozzi,

Have you discussed taking a genetic test with your doctor?  Testing positive for some of the most common genes related to Celiac and improved health on a gluten free diet is frequently accepted as a diagnosis for Celiac.  

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Sambozzi Newbie
Sambozzi
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Posted
9 hours ago, knitty kitty said:

Welcome to the forum,@Sambozzi,

Have you discussed taking a genetic test with your doctor?  Testing positive for some of the most common genes related to Celiac and improved health on a gluten free diet is frequently accepted as a diagnosis for Celiac.  

I’ve never had the genetic testing done, and she never suggested it. Would it be better to go to a gastroenterologist? Rheumatologist? 

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Sambozzi Newbie
Sambozzi
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Posted
10 hours ago, trents said:

Listening to your symptoms and your symptomatic experience with being off and on with gluten, I have no doubt that you have celiac disease. You may also find that other foods like oats and dairy cause similar symptoms as these two non-gluten foods not infrequently cause similar gut inflammation as gluten in the celiac population.

You are right on the money with that. I also react to dairy and oats (even certified gluten-free oats). My worst reactions happen when I’ve been exposed to gluten and dairy at the same time. 

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trents Grand Master
trents
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3 minutes ago, Sambozzi said:

I’ve never had the genetic testing done, and she never suggested it. Would it be better to go to a gastroenterologist? Rheumatologist? 

I would try the gastro doc first.

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Scott Adams Grand Master
Scott Adams
Posted

There are drawbacks to getting a diagnosis, for example higher life (and possibly health) private insurance costs, and policies can be harder to get.

In your case, given your severe symptoms I agree with your doctor--even if the test were negative for celiac disease you still have gluten sensitivity, something they can yet test for, and the outcome is the same, a gluten-free diet.

I also agree that if you're curious you could get a genetic test to see if you have the genetic makeup for celiac disease. This would be important for your direct family members who may also have the genes, and possibly celiac disease. Many celiacs have not symptoms, but research shows that the health risks are still the same.

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    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      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 . 
    • trents
      Recently Diagnosed Celiac- Need advice

      By trents · Posted

      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.  
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    • trents
      50 YO Male Recently Diagnosed with Celiac Disease

      By trents · Posted

      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.
    • Anmol
      Recently Diagnosed Celiac- Need advice

      By Anmol · Posted

      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
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