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Completely Confused
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6 posts in this topic

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.

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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).

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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.

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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!

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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.

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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

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    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
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