Sound Like Celiac?

[tpchan85]

Hi all, I've had chronic health issues and am wondering if I could be celiac.

 

My brother is a year older than me (Im 21) and had severe anemia when he was about 8 years old, he tested positive on the celiac blood test and was sent for an endoscopy - the biopsy revealed minor damage but not enough for the consultant to say definitively yes or no celiac. He initially ate gluten free and was given iron supplements and returned to normal, he chose to continue eating gluten anyway and has been fine for many years. Until now - he has been suffering from symptoms of indigestion / GERD and is going back for further tests. No other family members have been documented celiac.

 

My issues started when I was around 8 as well, I would infrequently get weakness after meals, especially if I tried to exercise soon after eating. At about 11 years old I rapidly gained a hell of a lot of weight, I went from being underweight to in the region of 240 lbs by age 14, I still have terrible stretchmarks as a result of just how quickly this weight gain occured. Around about age 12 I started to develop bowel symptoms too, I would wake in the night in terrible pain and have to sit on the toilet for many hours passing hard stool. Since this was all relatively infrequent I never told my parents and never saw a doctor.

 

Then at age 15 I started regurgitating both solids and liquids. I had a barium swallow and was found to have bad GERD. Two years later I developed daily bowel issues - constipation, diarrhea, bloating, gas, abdominal pain. Doctor diagnosed me with IBS. Around this time I also started having symptoms of a urinary tract infection but tested negative multiple times, doctor diagnosed me with Interstitial Cystisis.

 

At age 20 I finally managed to lose weight (close to 100 lbs) following a low carb diet.

 

Now at age 21 I've developed irregular heartbeat (premature atrial and ventricular contractions) and muscle spams all over for the last 4 months. I finally snapped and went to my doctor for tests. Every blood test including celiac came back negative. Colonoscopy and endoscopy clear aside from esophagitis although they didn't take a damn biopsy. Cardiologist test cleared my heart as fine. Doctors tell me I'm suffering from anxiety here  . 

 

Summary

- Brother is potential celiac dx

My symptoms:

- Weakness after eating

- Rapid weight gain

- Severe GERD

- IBS

- Interstitial Cystisis

- Irregular heartbeats

- Muscle spasms all over

 

Does this sound like celiac? Any help appreciated! 

[GF Lover]

Hi tpchan and Welcome to the Forum.

 

Here is a list of symptoms associated with Celiac Disease:

 

Open Original Shared Link

 

This explains appropriate Blood Testing:

 

Open Original Shared Link

 

Unfortunately, Celiac Disease may not be identifiable by the naked eye and biopsies must be performed.  It is also your decision whether to try a gluten free diet without a diagnosis.  There is also the possibility of NCGI which cannot be diagnosed.  Keep in mind if you do pursue a diagnosis again that you must be eating gluten for the antibodies to show up in the blood work.  Diagnosing Celiac is not very cut and dry and is open to interpretation to a degree.  Ruling out other medical issues is a must.

 

Good luck in what you decide to do.

 

Colleen

[nvsmom]

It could definitely be celiac disease or non-celiac gluten intolerance (NCGI).

 

Do you know what celiac tests were run?  The tests are not 100% sensitive, and neither is the endoscopic biopsy (about 1 in 5 are missed), so the tests will miss some celiacs. The more tests run, the more likely you are to be caught.

 

The full celiac panel is:

tTG IgA and tTG IgG

DGP IgA and DGP IgG

EMA IgA

total serum IgA (control test)

AGA IgA and AGA IgG (older and less reliable tests)

 

An endoscopy without a biopsy is fairly useless when it comes to diagnosing celiac disease. It sounds like you know that - it's a shame the doctor didn't.  

 

Keep eating gluten until you are sure all tests are done.

 

If you are done testing then you might as well try the gluten-free diet.  It's a hassle but it can't hurt to give it a try for 6 months.  And yes, it is a good idea to give the diet a loooonnng trial because celiac disease symptoms do not disapppear as soon as you go gluten-free, just like symptoms took a long time to increase so insidiously. A food and symptom journal can help you keep track of changes.

 

Good luck, and welcome to the board.  

[beth01]

I am really sorry to hear about all your symptoms, it really is no fun being sick and especially not for years on end.

 

Like the other girls stated, you can do a gluten-free diet on your own, no prescription needed.  Keep a diary of not only foods you eat but any symptoms you have.  That way if you are improved, you can go to the doctor and ask to do a gluten challenge and actually have the correct tests run.  You should also have your TSH checked along with any deficiencies that could be present.

 

I really have to ask one question that no one else has, why is your brother not following a gluten free diet?  Maybe he might want to be tested again even if he is no longer having symptoms.  Not following a gluten-free diet when you are a celiac will lead to more health problems later in life, some might end up irreversible.  He should be tested again.

[nvsmom]

I really have to ask one question that no one else has, why is your brother not following a gluten free diet?  Maybe he might want to be tested again even if he is no longer having symptoms.  Not following a gluten-free diet when you are a celiac will lead to more health problems later in life, some might end up irreversible.  He should be tested again.

 

Very good point. He's hurting himself by eating gluten, but I don't think he needs to be retested because he already knows that he has celiac disease. He just needs to go gluten-free before he ends up with more health issues.