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

First Appt With The Gi...


Hammod

Recommended Posts

Hammod Newbie

So I'm new here. I've suspected that I have Celiac/gluten intolerance for over a year now. My symptoms however started about 2 years ago with Bouts of Diarhea and Constipation. Bloating,Severe indigestion/heartburn. Muscle and Joint pain, extreme fatigue, psorasis, migraines within an hour of having a beer, Scabby rashes on the back of my legs. So I did what I do and I googled my symptoms and Celiac came up. I read the info on it and I decided I would try a gluten free diet. I felt better within two weeks! I kept to the gluten free diet for about 6 months even though in the back of my head I kept asking myself "what if that wasn't it? What if it was just a coincidence?" So 4 months ago I slowly started to introduce gluten again and at first all I noticed really was being bloated and a little tired. As I started to consume more I started to get the same symptoms back again. For the past month I have dealt with fatigue, severe heartburn to where I almost throw up, stomach pain, diarhea/constipation etc... So I was going to go back to the gluten-free diet and a lady I work with who has Celiac said "No - now is the time to get tested!" So I decided I would although I hate going to see doctors so I rarely go. I made an appt. with a GI

He was awful! He treated me like I was stupid and don't know my own body. LIke I was making it up. He kept questioning my heartburn and saying he didn't understand what I was feeling when I said I had heartburn. Uh well you know a burning sensation moving up through my chest and into my throat. duh... Then after he checked me out he said he really thinks that I have IBS and that he'll give me some medicine to help with the IBS and another medicine to help with the heartburn. And after I told him I had an aunt and a cousin who have Celiacs he agreed to do a blood test and a endoscopy. I still felt awful about how he acted towards me.

So I get home with my prescriptions and being me again I google the drugs to see what they are about and hmmm...he did prescribe me a medicine to help with the heartburn, but he also prescribed me an antidepressant! Really so now I just have a nervous stomach and my tummy hurts from anxiety? This is why I didn't want to go to the doctor. So I had my blood test, but still waiting for the results to come back and I have an endoscopy scheduled in a few weeks. Part of me doesn't even want to go through with it because if it comes back negative I can only imagine what he will say to me then?

Regardless I am going go back to gluten free after all is said and done.


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



Celiac.com Sponsor (A8-M):



MsCurious Enthusiast

So I'm new here. I've suspected that I have Celiac/gluten intolerance for over a year now. My symptoms however started about 2 years ago with Bouts of Diarhea and Constipation. Bloating,Severe indigestion/heartburn. Muscle and Joint pain, extreme fatigue, psorasis, migraines within an hour of having a beer, Scabby rashes on the back of my legs. So I did what I do and I googled my symptoms and Celiac came up. I read the info on it and I decided I would try a gluten free diet. I felt better within two weeks! I kept to the gluten free diet for about 6 months even though in the back of my head I kept asking myself "what if that wasn't it? What if it was just a coincidence?" So 4 months ago I slowly started to introduce gluten again and at first all I noticed really was being bloated and a little tired. As I started to consume more I started to get the same symptoms back again. For the past month I have dealt with fatigue, severe heartburn to where I almost throw up, stomach pain, diarhea/constipation etc... So I was going to go back to the gluten-free diet and a lady I work with who has Celiac said "No - now is the time to get tested!" So I decided I would although I hate going to see doctors so I rarely go. I made an appt. with a GI

He was awful! He treated me like I was stupid and don't know my own body. LIke I was making it up. He kept questioning my heartburn and saying he didn't understand what I was feeling when I said I had heartburn. Uh well you know a burning sensation moving up through my chest and into my throat. duh... Then after he checked me out he said he really thinks that I have IBS and that he'll give me some medicine to help with the IBS and another medicine to help with the heartburn. And after I told him I had an aunt and a cousin who have Celiacs he agreed to do a blood test and a endoscopy. I still felt awful about how he acted towards me.

So I get home with my prescriptions and being me again I google the drugs to see what they are about and hmmm...he did prescribe me a medicine to help with the heartburn, but he also prescribed me an antidepressant! Really so now I just have a nervous stomach and my tummy hurts from anxiety? This is why I didn't want to go to the doctor. So I had my blood test, but still waiting for the results to come back and I have an endoscopy scheduled in a few weeks. Part of me doesn't even want to go through with it because if it comes back negative I can only imagine what he will say to me then?

Regardless I am going go back to gluten free after all is said and done.

Ugh! Sorry you had to have such a bad experience with your GI! I go in for my first consultation with my new GI on the first, and I'm HOPING but not hopful of having a better experience than that. Its just a crime that they don't believe or listen to patients. I think though, that people who have never suffered with chronic symptoms like these... that they really just "don't get it"... its all text ... and words to them... they can't or don't translate it into REAL daily existence... or they would be a lot more attentive!

My regular doctor (who referred me to GI) is really nice ... but not a GI doctor, so he really didn't "get it" so much either. He also prescribed some low dose anti depressant... they sit in my medicine cabinet ... untouched. I also stopped taking my vitamin supplements, except Vitamin D an calcium, because that could do so much harm , and I already know my vitamin D was nearly non-existent (15 when it should be between 50-100). BUT I am going to ask them to check B-12 and what ever others come with that. ;)

Don't give up though! You've done the right thing getting blood drawn. I had TTG and it was negative. They did the Genetic test to see if I was in the 98% "pool" of people who have the predisposition to even getting celiac disease... and they never told me the results. :angry: Not sure if that's why he referred me to GI, or if he thinks its "IBS" the catch all for "I don't know whats wrong with you". :rolleyes: I have read over and over about people who test negative to TTG and then have a positive DGP... so who knows.

So I am going in to the GI armed with all my "connected dots" ...and I've decided I am going to push for full celiac panel and any other food intolerance testing I can get them to do. Once the testing is over, I am going Gluten FREE.. with or without my doctor's blessing, since I already know I feel a gazillion times better gluten-free. Good luck to you and hope you feel better soon! Keep us posted on your results! :D

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,899
    • Most Online (within 30 mins)
      7,748

    dcarter1682
    Newest Member
    dcarter1682
    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.