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Just Need To Vent
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It has been two weeks since I had my blood work done and I called the GI's office Wednesday and she still hasn't called me back to let me know what they are or mean. I am getting very frustrated and depressed. I feel like I will never find out what is wrong and will always suffer. My appointment to follow up with her isn't until May 25th! I cannot and will not wait that long to find out if I actually have a disease or not. My opinion is if you can't be courteous enough to give a patient a call back about theirs results then do not tell them they may have a disease they will have for the rest of their lives! Its crazy and stressful for us. I guess I vented enough for now. Thanks for anyone that listens and hope your day is going great!

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I called the doctor back and she said all of my labs were fine other than the anemia. I know better. Both gliadins where positive. She said no IBD on colonoscopy, no food allergy, just anemia and that I am fine. I know better. I think I may start the diet on my own and see for myself. I am so upset right now all I can do is cry. I'm right back to where I started, sick and no idea why. I can't afford to lose anymore weight. I am already underweight and depressed. I eat all the time, love food so something is going on. I have no idea what ingredients or things to avoid on the diet so any help right now would be appreciated.

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Beverly,

I am so sorry that you are suffering so much and not able to get a definative answer to your problems. With both gliadin antibodies positive they should have given you a biopsy. They may still want to do that. You could request one, if you want it. It can be frustrating to have to wait so long for a follow-up appointment. It is as if some doctors just doesn't understand the extent of our suffering. If they were ill with symptoms like ours would they want to wait 6 weeks to see the doctor?! I don't think so.

Have you checked into Enterolab ? There tests are more sensitive than the blood tests and can pick up gluten intolerance in it's early stages. But they are not widely accepted by most doctors. Some do accept them though.

You could start the diet now, but it will affect the biopsy if you choose to have it later. If you plan to try to get the doctor to do a biopsy, then you should wait to start the diet. If you would like to just do the diet and forget the "official" diagnosis, then many of us here can help you get started.

God bless,

Mariann

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I know exactly what you are going through! I am going through the same thing. I was so very sick this week and not only could I not talk to the doctor I could not even talk to a nurse. After 3 days of trying I called my primary care doctor and had them run interference for me. They could not tell me about celiac since it wasn't mentioned in the report so I have to wait for my appointment. At least my primary listened to me and helped me adjust my medication. I dont understand how a person can be suffering and they just expect us to wait. We still have lives and jobs and family we need to take care of.

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Sounds like you need an endoscopy, and really with positive antibodies your dr. should have suggested that as your next step. I would either change drs. and request that, or demand that from this one. It's too important to allow them to ignore it. Blood work seems to say very little about a person's health at times, because it always depends on exactly what the dr. was testing. My blood from my GI doc came back with terrible results, showing I wasn't recovering from this disease as I should be. Then, blood work that my orthopedist had taken checking other parts of my health came back so good he said I had the blood work "of an Olympic athlete." The difference can be huge depending on what was checked. Don't feel alone in this, remember, many have suffered like this and still came out of it ok in the end, so just hang in there and keep being proactive about your care.

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Thank you all so much for your replies. My husband took my test results to a doctor he works with(he works in medical records in a hospital) and the doctor said the IgA level was negative and that the ranges beside of it wasn't the right ones to go by but the ones to the IGG. My IGG was positive 33 and my IgA just has <20 so it is negative. The doctor said I may have had something for a while from both pregnancies and am now its going into remission and it could be nothing but simply pregnancy, that it can cause all kinds of weird things. Also he said I should request to have the test to determine exactly what may be causing my anemia. I've had it for years and never knew I could do that but he said they only do it if you request it. He said I may just not be absorbing iron. I am surprised the GI didn't even mention IBS. I always thought that if everything came back negative then that was their usual diagnosis. I still don't know what is wrong but I'm feeling better. Again thanks for all of your help!

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Hello All,

I am new to the group and the whole Celiac life. Beverly, I had testing a few weeks ago, I also had some parts came back negative, but my IGG was positive at 68. My Dr. says that indicates Celiac. I've started the diet, but it has been so hard and frustrating for me.

Stephanie

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    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
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    • I'm actually scared to go to the doctor and could use some advice
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