Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Completely Confused


j9n

Recommended Posts

j9n Contributor

I have been having problems for about 1 1/2 years. It seemed to come on suddenly and about the same time my doctor switched my blood pressure meds. The diarrhea got so severe the only thing that helped was a huge dose of flagyl. I was fine for a month. My GI runs every test in the book. Evidently I am a very healthy person! I am by this time so ill I am losing weight and missing alot of work. He runs a IGG, IGA panel and everything is normal but IGG is 34. He does a biopsy (2) and they come back negative but I have GERD, hiatal hernia. He tells me it is not celiac. Now I have diarrhea at least 12 times a day. I have sweats and can not walk because of the pain. I have a CT scan, normal except for very small fibroids (I am 42). My gyn says it is normal but gives me flagyl for 20 days because she can see I have an infection. I feel good for about 2 months. I called the GIs office and they tell me, over the phone by a nurse that I am borderline celiac and give me a prescription to a dietian. Now my blood pressure starts to rise and my PC doctor doubles my beta blockers. I was so ill I insisted they switch me to something else. Now I am on a medication that does not have diarrhea as a side effect. I tried to eat some crackers, bread, etc. No reaction. I went back to my GI and he basically shrugged his shoulders, says he thinks it might be bacterial overgrowth and come back in a year. Oh and don't take any more antibiotics. I really do not know what to do. I felt fine until last night. I was gluten free for 3 months with problems now not gluten-free and problems but less. I know no one can give me medical advise but I am so frustrated. This is the time of my life when I should be traveling to exotic places and having so much fun but I can not even go to a dinner party without the fear of "it" happening.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Guest jhmom

I know where you are and understand your frustrations. ;) All I can say is hang in there, stay after the doctors. You know something is wrong with your body and you need to be persistant, don't take NO for an answer.

I have similar problems and currently being checked for Lupus. Several of my test have come back positive but I do not have a diagnosis yet. My last GI doc thinks some of my abdominal pain and tenderness is due to inflammation of my intestinal wall, I guess some of the other probs can be related to that as well (diarrhea, nausea, etc).

Link to comment
Share on other sites
Guest gillian502

If you are going to the bathroom 12 times a day, it sounds like you have Colitis. Microscopic Colitis is not detectable without a colonoscopy including a biopsy (several biopsies, actually) so if you haven't had a colonoscopy yet, I'd say that's the next step. You might want to consider asking the doctor if a round of steroids would be appropriate at this time. Entocort is a steroid that's used for intestinal problems and does not have as many side effects as prednisone. I know how miserable you must be--I've had many health problems over the last 2 years myself and they are hard to handle, especially when it feels like no one is listening. Good luck to you.

Link to comment
Share on other sites
j9n Contributor

I had a colonoscopy and everything came back normal. Jhmom, I am really curious since I think my tenormin might be a huge problem. It is listed as a drug that can cause drug induced lupus. I started getting joint pain, leg cramps, etc. I asked my pc and she says, get this, "Those are not symptoms of lupus". She doubles my medication and I was so sick I could not leave the house. She also keeps telling me it is just IBS and won't refer me to another GI. Needless to say I am looking for two new doctors. I am tempted to ask my gyn to be my primary care since she is the ONLY one who will even try to treat me and she can refer to me some one else.

Thank goodness for this board. Sometimes just venting can make you feel better!

Link to comment
Share on other sites
Guest gillian502

I started taking Atenolol, which I believe is Tenormin, right? about a month ago. I had no idea it could cause serious problems, but I have not felt well since beginning it, despite the fact I'm on a very low dose. Could you tell me more about your experience with this beta blocker? I'm taking it for tachycardia.

Link to comment
Share on other sites
strack2004 Rookie

Hi! I would like to refer you to some posts by red345 (Kevin) about taking the type of products you are discussing. Posted around Sept. 21. My posts were nos. 17722 and 17716. I printed out that discussion, but don't have it with me, and can't remember what the title of the discussion was. Ruth

Link to comment
Share on other sites

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...