Potential false diagnosis of Celiac

[JosephK116]

Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac.

I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem. 

I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.

[cyclinglady]

2 hours ago, JosephK116 said:

Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac.

I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem. 

I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.

Positive biopsy and blood work?  It sure sounds like your doctor made the right diagnosis.  

Let me tell you my story.  Diagnosed after going for a routine colonoscopy because I am over 50.  GI saw my chart and noted that I was anemic.  I have a genetic anemia and I was iron deficient as well.  I lived like that my entire life.  But my wise GI ordered a celiac blood panel and it was considered mildly positive.  So, he ordered an endoscopy to my colonoscopy.  

I had been dairy free since I was young.  Was told that I had an allergy.  I had not any GI issues with gluten.   I was an avid baker.  I had nut issues and also mushroom, garlic/onion, and egg intolerances.  I had some pretty severe allergies to medications (anaphylactic) and some seasonal allergies along cats and horses.  

I was shocked.  My husband had been gluten free for 12 years prior to my diagnosis.  There is no way both of us would have gluten issues.  But...the tests did not lie.  My iron deficiency anemia resolved within months of my going gluten free.  Two months into the diagnosis, I fractured my back doing NOTHING!  I have osteoporosis as a results of having celiac disease.  

Grief is completely understandable.  Denial is a part of grieving.  But the proof will be in follow-up blood tests and how you feel.  

So, now I can eat nuts (not almonds), eggs (two a day every single)  and dairy.  Yes, ice cream!  I have yet to get back garlic and mushrooms, but I can live with that.  

I have Hashimoto’s too.  .  Once you have one autoimmune disorder, you can develop more.  The gluten-free diet may help, not only your celiac disease, but your UC issues as well.  

Try the diet.  I think you will be pleasantly surprised!  

[ravenwoodglass]

A dairy issue would not cause positives on the celiac panel.  You may even get dairy back after some time on a strict gluten free diet.  I am sorry you are having to deal with these issues but strictly following the diet may help not only the dairy issue but also may ease the UC. Ask any questions you need as we are here to help in any way we can. Do be sure to check the Newbie thread at the top of the Coping section for some valuable info on all you have to do to stay safe.

[Ennis-TX]

5 hours ago, JosephK116 said:

Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac.

I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem. 

I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.

i ended up with dairy intolerance over 10 years ago, and celiac over 4 years ago, then this year got ulcerative colitis diagnosis.

Dairy issues are caused by the fact the enzymes to digest it are produced by the tips of your villi, these are damaged first and most by the disease and you end up with dairy intolerance. Some people can add it back after a few years of healing. Other allergies and intolerance issues will also develop the longer your on gluten.....it will really just shorten the list more, as damage ramps up, digestive issues arise, and your body starts confusing other foods as a culprit and developing allergies.

Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups. UC common triggers are gluten, soy, dairy, and in some cases like mine it is triggered by carbs and sugars like glucose and fructose.....yeah I had to go grain free and change to a nut, seed, leafy low carb veggies and egg white diet.
Since you can not have nuts but do not mention meats I can say your lucky. I developed a issue where I can not digest meats due to my damage. I might suggest you look into a keto/paleo diet. Where you eat meats, eggs, leafy greens. a higher fat/protein diet.

Now after 8 months on this diet I am seeing even more improvement and had have several issues resolve and am putting on weight.

[ravenwoodglass]

7 minutes ago, Ennis_TX said:

Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups.

Ennis, can you tell us how to tell the difference between a UC flare and a glutening? It must be confusing for folks diagnosed with both to know at first which it is that is happening.

[Ennis-TX]

1 hour ago, ravenwoodglass said:

Ennis, can you tell us how to tell the difference between a UC flare and a glutening? It must be confusing for folks diagnosed with both to know at first which it is that is happening.

Pain wise a glutening celiac gets me more central gut pain and much worse with sharpness, urge to vomit, gurgles etc. UC is more along the the outside edges of your abdomen from the sides, lower area around the belt line, and upper area right under the rib cage, and is more of a boat and pleasure pain like your intestines are huge feeling.  UC triggers alot more gas, and makes you want to lie down I get the urge to massage and press on the pressure areas as it seems to help.
Timing wise Celiac glutening I notice within 20-60mins and main vomiting starts in 1-3hours after eating it. UC flare you get it like 4-18hours or later depending on transit time of your food. A glutening will normally result in both a celiac reaction and a later UC reaction.

For me a gluten CC or consumption issue also causes neurological symptoms, this is not true for some people but for me I also have a gluten ataxia, so the anxiety, panic, fog, mind looping, numb hands, loss of coordination or straight up motor loss is definite sign for me. Others will have to keep track with a food diary to nail down there own as every person can have a slightly different reaction.

I also find with UC I do not directly vomit, Sometimes with UC it can trigger constipation and if not remedied in 12-24 hours leads to m system backing up and vomiting. Celiac can also cause me constipation but there is a slight difference in where it seems to get stuck at first. Hard to explain but you can sort of feel it. Also I find a gluten celiac response will result in a week or more of constipation issues. Starting mid section then moving to the outside gut area and  but some people do not get these and get D instead. So this is not very reliable.

UC flare ups for me with my damage also always have bloody stools, worse flare ups its not just streaks but clots. Red and Dark red show it is in the large intestines. If you get tar like black  and red it is either a sign it is way back in the large intestine or in the stomach or small intestine. This makes my Anemia SOO much worse. Imagine how you feel with the loss of blood coupled with inability to efficiently absorb nutrients like iron and magnesium

Thing to recall is UC is mostly the large intestine while celiac is mostly the small, so symptoms and trying to get the feeling of where the problem is can help.  Also if you get a glutening expect to have the UC flare up right after the celiac flare up.

NOTE it is hard for me to say still, on the exact details and clarity, it has been since june of last year that I had a major gluten consumption issue. UC I get more regular but without the direct comparison in a while my memory is a bit iffy. Just trying to recall those exact pains and feelings from that last time. Also UC seems to wax and wane in and out while almost always being present for months in the background you just feel a bit off in the gut. SO many triggers, I felt that for years I swear til I went to this keto diet and dropped all fruit, sugar, carbs, and grains. Could have been the anemia, but I think it was more of a combination of the inflammation, bleeding, gas, and just being uncomfortable.

[JosephK116]

2 hours ago, Ennis_TX said:

i ended up with dairy intolerance over 10 years ago, and celiac over 4 years ago, then this year got ulcerative colitis diagnosis.

Dairy issues are caused by the fact the enzymes to digest it are produced by the tips of your villi, these are damaged first and most by the disease and you end up with dairy intolerance. Some people can add it back after a few years of healing. Other allergies and intolerance issues will also develop the longer your on gluten.....it will really just shorten the list more, as damage ramps up, digestive issues arise, and your body starts confusing other foods as a culprit and developing allergies.

Your UC complicates things and is honestly going to make you much madder then the Celiac as per its flare ups. UC common triggers are gluten, soy, dairy, and in some cases like mine it is triggered by carbs and sugars like glucose and fructose.....yeah I had to go grain free and change to a nut, seed, leafy low carb veggies and egg white diet.
Since you can not have nuts but do not mention meats I can say your lucky. I developed a issue where I can not digest meats due to my damage. I might suggest you look into a keto/paleo diet. Where you eat meats, eggs, leafy greens. a higher fat/protein diet.

Now after 8 months on this diet I am seeing even more improvement and had have several issues resolve and am putting on weight.

The UC is a whole different beast. I’ve been eliminating tons of food. Meat is definitely good to me. I can eat all the steak, chicken, and pork without problems. I agree that paleo would be great for me. I’m gonna look more into their recipes. 

Have you had any problems with fruits and veggies causing flare ups? I make smoothies with mixed berries, banana, gluten free oatmeal, spinach, and a splash of juice. It seems to be a cause. Maybe it’s the high fiber? I’m not sure. That and caffeine. I’m having a hard time eliminating caffeine though  

[Ennis-TX]

51 minutes ago, JosephK116 said:

The UC is a whole different beast. I’ve been eliminating tons of food. Meat is definitely good to me. I can eat all the steak, chicken, and pork without problems. I agree that paleo would be great for me. I’m gonna look more into their recipes. 

Have you had any problems with fruits and veggies causing flare ups? I make smoothies with mixed berries, banana, gluten free oatmeal, spinach, and a splash of juice. It seems to be a cause. Maybe it’s the high fiber? I’m not sure. That and caffeine. I’m having a hard time eliminating caffeine though  

Yep no fruit, juice, sugar, or grains like oatmeal. The sugars glucose, fructose etc. Are common causes of flares in some. Sugar free fiber like nuts, but butters, cocanibs seem to be great for me. Keto diet sugar free high fat, mostly over cooked to mush or blended works great for me......heck as a baker I had to invent low carb, grain free, starch free bread. Sorta lead to a god like revelation and business took off with diabetics and my bakery.

[cyclinglady]

Hey Joseph!  

You might re-think that gluten-free oatmeal.   For years,  oatmeal was prohibited.  Researchers eventually determined that some celiacs could have oatmeal as long as it is pure (no possibility of cross contamination from field to factory).  But some 10% of celiacs  still react to oatmeal.  Plus, there is a new controversy over sorted vs. dedicated grown oats.  So, best to avoid oats for the first six months and then experiment.  

When my GI tract is inflamed from celiac disease (flare-up) from accidentally being exposed to gluten, I stick to well-cooked foods (even fruit).  It makes it easier to digest.  Once better, I go back to my normal gluten-free diet.  

[squirmingitch]

Joseph, for the first 6 months at least, you might want to cook ALL fruits & veggies except maybe bananas & pears. Make it easier on your damaged gut to digest and allow it to heal faster. Also, home made bone broth is amazingly nutritious as well as healing.

Open Original Shared Link

[GF-Cheetah Cub]

My daughter was diagnosed with celiac in 2014.    She never had a problem with gluten, and she is still a silent celiac.  But she was formally diagnosed with blood test and biopsy.   So, having no "problems" with gluten does not necessarily mean you are not celiac.

I too, did not want to accept that my daughter has celiac, and we did a DNA testing, and found that she does carry one of the celiac genes.   So, if you do not want to accept celiac (or just very curious), you can get a dna test to see if you have one of these genes.   I was told that people without one of those celiac genes can not have celiac.

[JosephK116]

49 minutes ago, gluten-free-Cheetah Cub said:

My daughter was diagnosed with celiac in 2014.    She never had a problem with gluten, and she is still a silent celiac.  But she was formally diagnosed with blood test and biopsy.   So, having no "problems" with gluten does not necessarily mean you are not celiac.

I too, did not want to accept that my daughter has celiac, and we did a DNA testing, and found that she does carry one of the celiac genes.   So, if you do not want to accept celiac (or just very curious), you can get a dna test to see if you have one of these genes.   I was told that people without one of those celiac genes can not have celiac.

Is this something that you can get done at th GI? Who administers this test? I definitely would like to get this done. I think I’m going to get my son tested too. 

[cyclinglady]

1 hour ago, JosephK116 said:

Is this something that you can get done at th GI? Who administers this test? I definitely would like to get this done. I think I’m going to get my son tested too. 

Why?  Some 35% of the population carries the genes that could develop into celiac disease.  But only a few actually develop it.  It is used to exclude celiac disease and not to diagnose it.  There are some outlier genes too that have been discovered recently, so the gene test is not perfect.  

My daughter has tested negative on the antibodies test.  She will have to get retested in the future. But we will not get the gene test.  It may impact her ability to get life insurance or maybe even health!  Just something to consider.  

[GF-Cheetah Cub]

Our doctor ordered the Prometheus Celiac Plus test for us.   It is some sort of in depth celiac blood test.   This test report showed  which celiac gene my daughter has.  

I think you can ask your GI for a celiac blood test with EMA.   When I asked for the EMA test, we got this Celiac plus results back.   I believe Prometheus is the name of the lab.

Our insurance paid for this test.   If your insurance won't pay for it, I know there is a lab in Colorado that offer this test for a few hundred bucks.   You have to google for it.   I forgot their name.

[GF-Cheetah Cub]

cyclinglady, I think Joseph is hoping to exclude celiac disease.   I feel for him, as I also had a hard time accepting my daughter's celiac.      I had this gene test done hoping our GI doctor made a terrible mistake.   But now I have triple prove that my daughter really does have it!

I agree with you and others, that if biopsy confirmed celiac disease, you do have celiac disease. (But on occasion, doctors can be wrong, right?)

However, I have a distant relative (not related by blood) who thought she had celiac diease for 10 years (no biopsy done), lived a strict gluten free life style, but still suffered from health issues, ended up in the mayo clinic, and found out that she did not have celiac.    She did not have the celiac gene.

[Victoria1234]

9 hours ago, gluten-free-Cheetah Cub said:

She did not have the celiac gene.

There is at least one person here who does not have either of those 2 celiac genes who is celiac.

[cyclinglady]

Cheetah,

We all have to make our own health decisions based on our individual circumstances.  There is not any “one size fits all” approach.  ☹️In your daughter’s case, she was asymptomatic.  I also would find it hard to believe that she had celiac disease despite confirmed biopsies and antibodies tests.  I get the denial.  I just had anemia that was disguised by a genetic anemia.  I was shocked at the suggestion of celiac disease.  My hubby had been gluten free for 12 and I knew exactly what the treatment meant — gluten free for life.  A total game changer.  

Because we have bought our health insurance for over 20 years, we have lived through the times that I was uninsurable due to my Hashimoto’s, Rosacea and toe nail fungus (yes, that is right).    I never went without, but I could not freely jump from plan  to plan.  My premiums were higher than my hubby’s.  So, we worry that health insurance could change and I would be uninsurable again.  (Did I mention that our annual premium is $24,000?)

However, the genetic test can be invaluable but is mostly used to help rule out celiac disease.  There are other genes associated, but they have not been studied well.  

“So far, scientists have identified over a dozen possible non-H.L.A. genes that may be associated with celiac disease, but whether these genes actually play a role remains to be seen.”  (Sheila Crowe, now head of the American GI Association).  

Open Original Shared Link

The antibodies test, in conjunction with the biopsies is the best means of diagnosing celiac disease to date.  The blood test is the least reliable as there are false positives (rare).    It is hard to dispute villi damage.  Too bad your Aunt did not get a biopsy, but understandably, an endoscopy can be costly if you lack insurance and there are many other reasons, so many are forced to forgo this procedure.  

Open Original Shared Link

  It is unfortunate that we must weight the risks and benefits of everything.  

 

[Posterboy]

On 10/20/2017 at 11:20 PM, JosephK116 said:

Let my start by giving a brief summary of what I’ve been diagnosed with. Just over the past year I’ve been diagnosed with Celiac, EOE, lactose intolerance, soy allergy, tree nut allergy. Most recently diagnosed with Ulcerative Colitis. The Colitis came 8 months after having found out I had celiac.

I have never had problems with gluten in my life. Dairy was something I had to eliminate because of the excrutiating stomach pains I would get from it. But I can have gluten any day and not have a problem. 

I was diagnosed with a biopsy and followed by bloodwork. But who’s to say that dairy wasn’t the cause? I just feel like the GI was very quick to jump on the diagnoses without fully understanding my medical history, prescriptions I’ve took in the past ie long term antibiotic use, accutance, and 7 years of constant NSAID use.

josephk116,

this is to your original question.

NSAIDs can cause villi atrophy.

Open Original Shared Link

from the abstract.

" Villus atrophy was associated with use of proton-pump inhibitors (PPIs; OR, 1.6, 95% CI, 1.1-2.3), non-steroidal anti-inflammatory drugs (NSAIDs; OR, 1.64, 95% CI, 1.2-2.2), and selective serotonin reuptake inhibitors (SSRIs; OR, 1.74, 95% CI, 1.2-2.5)."

here is the thread on this topic.

I hope this is helpful.

***this is not medical advice but NSAID's can cause villi blunting.

here are other possible causes of villi blunting.

Open Original Shared Link

good luck on your continued journey.

I found my BP medicine Losartan was also causing me some lactose intolerance problems.

see this thread.

again I hope this is helpful.

posterboy,

[ravenwoodglass]

NSAIDs may contribute to villious blunting but they won't cause celiac blood tests to be positive.  If a person has both blunting and positive blood work they have celiac.  While it appears that the endo came first Joseph did have a follow up celiac panel run.