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Symptoms

mamam

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mamam Newbie
mamam
Posted

I am 41. In the past 7 years I have had trouble with Gerd, stomach pain in the pancreas area, high lipase. No diarrhea, no bloating except that time of the month. I had an ERCP last year, gall bladder removed 3 years ago when I had a pancreas attack/sludge in the gallbladder(inflamed). Still, they are not sure why I am having troubles with pain, trouble swallowing, reflux, etc.. I just scheduled an endoscope yesterday with a new doctor. Today, I found out that my brother(40) was just diagnosed with Celiac. What are the chances my symptoms could indicate that same thing? The gastro doctor last year thought I might just be having a reaction to the gall bladder surgery. Also, I have always had poor tooth enamel- explained to me as a reaction to some meds I took when I was a kid. I probably had asthma as a kid, and now two of my children do too. Any similiarities or am I way out there?

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par18 Apprentice
par18
Posted
I am 41. In the past 7 years I have had trouble with Gerd, stomach pain in the pancreas area, high lipase. No diarrhea, no bloating except that time of the month. I had an ERCP last year, gall bladder removed 3 years ago when I had a pancreas attack/sludge in the gallbladder(inflamed). Still, they are not sure why I am having troubles with pain, trouble swallowing, reflux, etc.. I just scheduled an endoscope yesterday with a new doctor. Today, I found out that my brother(40) was just diagnosed with Celiac. What are the chances my symptoms could indicate that same thing? The gastro doctor last year thought I might just be having a reaction to the gall bladder surgery. Also, I have always had poor tooth enamel- explained to me as a reaction to some meds I took when I was a kid. I probably had asthma as a kid, and now two of my children do too. Any similiarities or am I way out there?

Celiac is genetic so if you have a first degree relative diagnosed it is at least a good possibility. There are tests that could be run (before trying the gluten-free diet) or you can try the diet to see what happens to your symptoms. My suggestion is not to do both at the same time. Bad tooth enamel and reflux are just a few of the many symptoms associated with Celiac. Try to educate yourself with Celiac testing procedures and the gluten-free diet on the internet before deciding on which course of action to take first. Good luck.

Tom

psawyer Proficient
psawyer
Posted

Your symptoms are consistent with celiac disease, but other causes are possible.

If you have a first-degree relative (sibling, child or parent) with diagnosed celiac disease then you should definitely be tested. Since there is a genetic factor, your chances of having it are significantly higher when you share half of your DNA with a known celiac.

The "gold standard" recognized by a majority of doctors remains the biopsy of the duodenum (upper part of the small intestine), but many are now accepting blood tests as a definitive diagnosis tool. Ask your doctor to run the full celiac blood panel. The most specific indicator, as I understand it, is the tTG test, but it should be done along with others.

I have had the duodenal biopsies twice, once in 2000 and again last month. In 2000, the doctor described my duodenum as looking like the inside of a garden hose: smooth. Last month, there was "no indication whatsoever of celiac disease damage." What that shows is that if you adhere strictly to the gluten-free diet: your intestine will (may) recover; and, you need to be eating gluten for the biopsy to detect celiac disease.

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    • trents
      New (possible) celiac diagnosis

      By trents · Posted

      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      New (possible) celiac diagnosis

      By Judy M · Posted

      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      Patiently Waiting to See Results

      By Scott Adams · Posted

      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      Gluten free beer ?

      By Scott Adams · Posted

      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • trents
      Patiently Waiting to See Results

      By trents · Posted

      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
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