What Else Can Resemble Celiac Disease?

[Jake93]

Hello - I'm in the midst of testing for hypothyroidism & celiac disease.  I hope that tTG-IgA testing is positive.  

I'm a 23 year old caucasian male with worsening symptoms since childhood.  

I have (among a myriad of other symptoms) increasing memory problems, headaches, stomach pains & significant digestive problems, freezing cold body temperature with numb/cold hands & feet, blurry vision, joint pain, no libido, dizziness and exhaustion.  This has been worsening with increased symptoms despite a high level of fitness, and a passion for nutrition.  It has become extremely difficult to work, socialize, exercise etc.  I'm becoming slightly desperate as people have been minimizing my symptoms

I've stopped believing that my symptoms are "normal", and that this is a regular way of living.  I believe it points to celiac disease - a doctor was the initial person to clue me in, luckily!    Can anything else resemble these symptoms, or do other celiac sufferers have my symptoms?

 

Thank you!

[GFinDC]

Hi Jake,

Welcome to the forum!

There are some things about your symptoms that might indicate celiac disease.  Digestive problems are a classic celiac symptom, although some people have no digestive symptoms.  That confuses some doctors who think if you don't have digestive symptoms you can't have celiac disease.

Weight loss or failure to gain weight while eating a normal diet is another classic celiac symptom.  Although, sometimes people actually gain weight with celiac disease which also throws a lot of doctors off.

Your thyroid symptoms are another link.  Some people with celiac disease also have another autoimmune condition called Hashimoto's Thyroiditis.  Hashimoto's can destroy the thyroid resulting in various thyroid symptoms as the disease progresses.  They test for antibodies to the thyroid to diagnose Hashimoto's.  There have been a number of people post on the forum about having both Hashimotos and celiac disease.  There is a somewhat higher chance of getting another autoimmune condition if you have one already.

Fatigue is a symptom of celiac disease, brain fog, difficulty walking, memory problems, sleep insominia, and something like 200 more other symptoms can match celiac disease.  Celiac has so many possible symptoms and it can be very difficult to diagnose without proper testing.

The testing process is generally a screening test (ttg IgA) followed by either a complete celiac disease test panel and or an endoscopy.  You should continue to eat gluten until all testing is completed, or the test results won't be accurate.

In celiac disease the immune system attacks the gut lining (vili), which impairs the ability to absorb nutrients.  So a test for proper vitamin and mineral levels is helpful.

It sounds to me like you came to the right place Jake.

[Jake93]

17 hours ago, GFinDC said:

Hi Jake,

Welcome to the forum!

There are some things about your symptoms that might indicate celiac disease.  Digestive problems are a classic celiac symptom, although some people have no digestive symptoms.  That confuses some doctors who think if you don't have digestive symptoms you can't have celiac disease.

Weight loss or failure to gain weight while eating a normal diet is another classic celiac symptom.  Although, sometimes people actually gain weight with celiac disease which also throws a lot of doctors off.

Your thyroid symptoms are another link.  Some people with celiac disease also have another autoimmune condition called Hashimoto's Thyroiditis.  Hashimoto's can destroy the thyroid resulting in various thyroid symptoms as the disease progresses.  They test for antibodies to the thyroid to diagnose Hashimoto's.  There have been a number of people post on the forum about having both Hashimotos and celiac disease.  There is a somewhat higher chance of getting another autoimmune condition if you have one already.

Fatigue is a symptom of celiac disease, brain fog, difficulty walking, memory problems, sleep insominia, and something like 200 more other symptoms can match celiac disease.  Celiac has so many possible symptoms and it can be very difficult to diagnose without proper testing.

The testing process is generally a screening test (ttg IgA) followed by either a complete celiac disease test panel and or an endoscopy.  You should continue to eat gluten until all testing is completed, or the test results won't be accurate.

In celiac disease the immune system attacks the gut lining (vili), which impairs the ability to absorb nutrients.  So a test for proper vitamin and mineral levels is helpful.

It sounds to me like you came to the right place Jake.

Thank you so much for the detailed answer!  My blood test result came back negative.  However, I've decided to limit my consumption anyway as there seems to be a connection.  

As you say, a complete testing involves the biopsy, so I may not be out of danger yet anyway

[cyclinglady]

Please ask your doctor to run the rest of the celiac panel.  The TTG is excellent and when it was created, doctors thought it would  pretty much catch all celiacs.  Bu they were wrong.   Often PCP doctors are prohibited  from ordering the complete panel (it's all about the money).   I always test negative to the TTG tests.  

Also, ask your GI doctor to check for Crohn's, SIBO, etc.  Something is wrong.  You should be healthy at 23!  

[GFinDC]

Like cyclinglady says Jake, the complete celiac panel may be in order.  The ttg IgA is only one of several antibody tests they can do.  Some of us just don't pass the common screening test (cyclinglady)  but still have positives on another antibody test.  We aren't all the same and our immune systems vary.

[Jake93]

Thank you for the further replies!

I see my family doc soon to go over the findings.  I assume we will do some more exploration, and talk about the full panel of testing.  

The funny part is that I am "healthy" besides these chronically worsening symptoms

[GFinDC]

Hi Jake,

You may not be part of the 1%, but you could be part of the 2%.  Probably more fun to be part of the 1% though.

Open Original Shared Link

How do you get a doctor to perform a biopsy when the blood test is negative?

Guidelines may or may not be followed; it all depends on the physician’s judgment in each individual case. Most doctors won’t do a biopsy with a negative test because the test is about 98% accurate. However, by definition, 2% of those with celiac disease do have a negative test, so experienced physicians must handle each case with skill, expertise and balance. A biopsy may have been helpful in some cases. If discovered that the villi are normal, a patient could be classified as having “Open Original Shared Link.” March, 2016

[cyclinglady]

11 hours ago, Jake93 said:

Thank you for the further replies!

I see my family doc soon to go over the findings.  I assume we will do some more exploration, and talk about the full panel of testing.  

The funny part is that I am "healthy" besides these chronically worsening symptoms

Yeah, I ran a 1/2 marathon and  trained for (and finished) a 100 mile bike ride, while I was anemic months prior to my diagnosis.    Amazingly, the body adapts....at least for a while.  ?

A full panel will help rule out celiac disease or diagnose it.  If you do not get one, you'll never really know.  

[Jake93]

1 hour ago, cyclinglady said:

Yeah, I ran a 1/2 marathon and  trained for (and finished) a 100 mile bike ride, while I was anemic months prior to my diagnosis.    Amazingly, the body adapts....at least for a while.  ?

A full panel will help rule out celiac disease or diagnose it.  If you do not get one, you'll never really know.  

Interesting!  I find that I'm technically in better shape than 95% of my peers (including a resting heart rate of 50 or below), and have accomplished a lot athletically - but often I go out for a run and become immediately exhausted.  If I go out for a hike with friends, I usually get very dizzy and utterly exhausted to the point of not being able to talk... but I just choose to push through it.  But, as you say, the body can only adapt for so long.  I'm now finding it increasingly hard to push through as my symptoms worsen.  

[PugMom]

Hi!

I was just tested for celiac and I was only positive for TTg IgG and very low on the rest. I am still waiting to hear from my Dr. on the Ultrasound results. My pain is under the right ribcage and back and then in my colon. I'm 27 and I have lost 15 pounds, severly fatigued and experiencing arthritis in my hands, elbows and knees. I think the next test for you in a complete celiac panel and possibly a endoscopy. If you are still negative I would look into Crohn's Disease. I read that being positive for IGG can also mean you may have another autoimmune disease. With my colon being severly affected I think I may have Crohn's or Colitis as well.