Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

More Testing...


Phedre

Recommended Posts

Phedre Rookie

After all the mess with my bloodwork (which was found to be "inconclusive" by one doctor and "normal" by another), I was referred to a GI specialist and we have been working together since then. After looking at my blood panel information and discussing my symptoms with me, he suggested a gastic emptying study to see how my stomach was processing food... That was last Friday and turned out to be completely normal. At that point, he said that he would like to do an endoscopy and colonoscopy to see what else was going on since my symptoms hadn't changed...

The procedures were this morning and while the prep was awful :( ugh, the procedures really weren't bad... In recovery (while I was still somewhat out of it) he explained that he found signs of gastritis which he thinks is largely caused by stress because I have a "stressful job." I also have a hiatal hernia but he said that the colonoscopy looked normal. They did do a biopsy though I'm not sure when I will hear the results as my doc is going out of the country for 3 weeks.

He prescribed some Nexium for the the gastritis and I'm assuming I will see him sometime after he gets back from his trip to discuss my progress. Since I've finally had the biopsy, I've decided to go gluten free and see how things go - at this point, it can't hurt and as I've said before, if I improve on the diet, that's proof enough for me even if my bloodwork and biopsy don't confirm.

So that's my update... I'll be back to post more once I've had some progress with the diet and see how it effects things. It'll be a great time to try out all of the wonderful recipes I've been reading about here!

Thanks everyone...


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

I am glad you are going to try the diet. Gastritis is a common finding for us. My GI was really not pleased when I went back after mine and gave him back all his pricey samples and told him I used pepto bismal, once. He looked at me like I was nuts but as soon as I went on the diet the stomach pain ended. Note that I am not telling you not to take the script, that is your decision and your doctors, I am simply relating my personal experience with a clueless GI doctor. He let me suffer D for 15 years and told me I had IBS, after I was gluten-free and went back to tell him how I was doing on all his drugs he wasn't really happy when I told him I wasn't taking any of them and how much success I had with the diet. Not because he was unhappy with my recovery but because he never even thought of celiac.

I hope the diet works for you, I know for me it was a long, painful, expensive road to diagnosis. Mostly because I don't show up in blood work. In fact the reason I post here is because I don't want others like me to end up like I was. I'm not alone there, there are quite a few of us here.

Phedre Rookie
I am glad you are going to try the diet. Gastritis is a common finding for us. My GI was really not pleased when I went back after mine and gave him back all his pricey samples and told him I used pepto bismal, once. He looked at me like I was nuts but as soon as I went on the diet the stomach pain ended. Note that I am not telling you not to take the script, that is your decision and your doctors, I am simply relating my personal experience with a clueless GI doctor. He let me suffer D for 15 years and told me I had IBS, after I was gluten-free and went back to tell him how I was doing on all his drugs he wasn't really happy when I told him I wasn't taking any of them and how much success I had with the diet. Not because he was unhappy with my recovery but because he never even thought of celiac.

I hope the diet works for you, I know for me it was a long, painful, expensive road to diagnosis. Mostly because I don't show up in blood work. In fact the reason I post here is because I don't want others like me to end up like I was. I'm not alone there, there are quite a few of us here.

Thank you - I'm encouraged by your story mostly because it sounds so similar to mine. When I heard "gastritis" my brain (although fuzzy from the sedation) went "aha, inflammation!" and connected that with celiac while my doctor connected it with stress. I hate to say bad things about my doc as he is the first person to ever take me seriously and not just brush me off with "it's IBS, get over it" but I was disappointed when he said he didn't think that was a possibility after everything he saw.

I'd already decided to go on the diet, I basically was just waiting for my biopsy first - now I can get started :) I'm going shopping today and although I will miss gluten, I'm optimistic and excited. I'm still going to try the meds for at least a few weeks to see if that helps any also but after that we'll see.

Thanks again for sharing your diagnosis process and commenting - it is nice to see others sharing their stories and trying to encourage those of us who have had less than stellar luck with doctors. :)

igd Newbie

I watched a very informative show on UCTV the other night about Celiac disease that may help you and anyone else with questions. Two physicians and a nutrionist spoke for a total of 86 minutes and it was excellent! Here is the link. wasOpen Original Shared Link Good luck!

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      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
      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
      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
      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
      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. 
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.