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fripp017

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About fripp017

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  1. So as you can see I eat very well. I felt good after discovering the casein issue, I tried just lactose free and that didn't help. I would still have bad days and spent some time googling the internet etc and came across fructose malabsorption and found an article stating that celiacs can have a problem with both dairy and fructose and it was like a light bulb going off. Such as once I ate at a restaurant and blamed the meal but I did have a cup of hot tea with a ton of honey (all fructose) in it and 1/2 hour after the tea was in the loo but again I thought I was glutened by meal. Also, tried pamela's bread mixes and gluten pantry. Got sick on both and suspected maybe xantham gum and posted this a few times on this board that xantham bothered me. Gave up all xantham and that still didn't work. After I discovered the fructose malabsorption, I looked up the products I was giving up and Pamela's contains both honey and molasses and the gluten pantry mix contained Honey! I have gone back to bread products that are gluten-free/df/sf with no honey (plain sugar is fine as long as not too much) and have been totally fine, so poor xantham gum got a bad rap. So I guess what I am saying is everyone is different and you maybe fine with a high fructose diet or having soy proteins but if you are still not improving become a detective and keep a food diary listing EVERYTHING you ate that day plus how you felt. Also remember it can take two or three days to show symptoms sometimes so it can be frustrating. Feel free to PM me anytime if you need encouragement. It's taken me a year and a half gluten free to finally go 16 days with no symptoms but I was also sick with stomach stuff for over 20 years so I need to also keep that in mind.

    Thank you so much for your advice. I see how creative you can be. It's just frustrating to have so many "normal" options taken away. By the way, where do you buy the almond milk?

    Thanks,

    Jessy


  2. I went 16 days with no symptoms at all and I was in Maui, so eating out a lot! That was a new record for me, so just sharing to let you know it is possible to get better but be an active label reader because gluten, sugar, and dairy are sometimes in foods that you would never suspect! Good luck!

    Kathy,

    I see that you are gluten, soy, and dairy free. What can you eat!?! I find it tough already to avoid gluten, and I have learned about some of the tricky wording for it, but to have to do that with all three? Do you feel better? Have your symptoms stopped all together yet?

    Thanks for the help,

    Jessy


  3. So, my Celiac "diagnosis" is a long story. Needless to say, I have been gluten-free and feeling pretty awesome for a little over a month. Suddenly the abdominal pain has kicked back in, but not as severely as before. I assume it's dairy and blame my stubborness for not just avoiding both. My main concern is if I have to stay away from dairy products or do I have to stand in the store and read the labels for both gluten and whey?


  4. I'm glad you posted this. I was "diagnosed" with Celiac Disease in February. My doctor couldn't give me a full diagnosis, because he's a jackass, and me and my pcp believe that I caught it pretty early. I had only a few symptoms, but they were severe. I had abdominal pain that would send me to the ER and extreme fatigue and irritibility. I have been gluten free ever since, but recently I have started having abdominal pain coming back. I was hoping to get away with just being gluten free. You see people on this site who are gluten-free, dairy-free, soy-free and all this other stuff. I think having Celiac disease does make your body more vulnerable to sensitivity. Dairy is a common one. I have actually started weeding out dairy because of the pain coming back. If you noticed it was yogurt, then you should consider going dairy free.


  5. I walk around every single day not knowing if I have Celiac or Gluten Intolerance and to be honest its driving me crazy.

    I do have multiple food sensitivities so when I experience problems i dont know if its trace amounts of gluten that i consume or other foods that are causing the problems...when i say problems I am referring to constipation...my only real digestive symptom

    At this point I refuse to go back on gluten for 2 months to get retested and also absolutely do not want a Celiac diagnosis.

    For the first part I quoted - I am the same way. I actually saw my GI on Feb. 25th and he said "You probably have Celiac." What the hell is "probably"? I argued with him and he even used the expression "ape poop" when I asked him why he couldn't diagnose me. My blood test antibodies were elevated, my biopsies came back showing damage, and my h. pylori test came back neg. This pretty much proves that gluten is my enemy. But, I was told that some people can have chicken or rice sensitivities that causes the damage to the small intestine. That may be why you are producing antibodies and not feeling well. Do you eat chicken and/or rice often? I have also read that being on the gluten-free diet can cause constipation by itself because of the lack of foods with fiber.

    And, for the last quote . . . I feel the same way about testing and dealing with idiot doctors. I am so tired of them guessing. It's your choice to fight. I have two children that I want to be checked out, so I am fighting for the diagnosis only so they won't have to suffer like I have. There are lots of great people on this site and they can be a great help when going through all of this. If you don't want to be diagnosed then eat what makes you feel good. When the doctors couldn't figure out what was wrong in the begining, there were days when I woke up and I thought I am gong to eat anything I can find to make me feel okay. The next, after suffering, I kept thinking how I would rather starve than have to feel the pain anymore. If you can find what makes you feel fine, you don't need a diagnosis. Doctors, in my opinion, aren't that reliable anyways.

    Good luck!! I hope you feel better!


  6. Everyone here has that great doctor story. (lol) Had my first doctors apoint. since taking my self off gluten. I started off telling him all the symptoms I had before switching my diet. Then I told him the have all vanished in 7 days since starting the gluten free diet. (insomnia, vertigo, nasuia, extreme fatigue, irritablity, headaches you name it). Not sure if anyone had ever requested specific blood work before to him, but he was shocked, but very nice about it.

    Ok whats another blood test, guess he can not stand to have one of his patients figure out what is wrong after 6 years since he couldnt.

    It's nice to know I am not the only one with an idiot doctor. My is actually my specialist. I have had blood work come back showing signs of Celiac. My GI even did the biopsies and just ran tests for stomach bacteria, even though all of my symptoms point to Celiac. I was off gluten for a week before I saw my GI and I told him how great I felt. He said it was probably ulcers. I couldn't believe he said that. I have had tests every week to two weeks and none of them have returned any results EXCEPT the Celiac antibodies.

    I am at the point where I want to tell my doctor off, like you did lol. He is driving me crazy. I just want to tell him to stop wasting money and diagnose me already.


  7. So if I read this right the doctor didn't even do a draw for celiac tests? Although I did notice you stated you already had a postive test, the IGG. Did they do an endo after seeing these blood results? If they did what were the results and did they do at least 5 biopsies of different areas?

    You have a legal right to them. I am assuming you are here in the US.

    My PCP gave me copies of my labs to take to the GI specialist. I looked it over and I was postive for IGG and equivocal IGA. I just had my endo on the 6th. My doctor didn't tell me much. He said everything looked "fine." When I called him for the results, which took five calls to the office, he told me the biospy was "inconclusive." I have read that sometimes you have to go into the lower part of the small intestine to get more accurate biospies. I don't know. I figured if my tests were showing elevated IGG and IGA, then he should at least be looking at gluten intolerance and looking to rule out Celiac. Instead, he seems to be trying to rule out all the "common" stuff.

    My plan is to wait for the blood results (I am assume that it is going to be negative because I am certain I have had this test done already) and see what the doctor does next. If he tries to focus on some other "common" illness, I am probably going to request a copy of all my tests and find a new specialist.

    Thank you for your support. I appreciate all the support the members give me. It is probably the only thing that keeps me fighting.


  8. I went on a self prescribed gluten free diet about 3-4 weeks ago.

    Or can I wait even a little longer to purposely damage myself, because even if the appointment is on April 8th the procedure wouldn't be for another few weeks after that.

    I did the same thing ... I was on a gluten free diet for a week. After 3 days, my pain noticably decreased. After the third day, my energy returned and my irritibility went away. Everyone thought I was a different person. I had my GI appointment so I was doing research on Celiac and read that you "should not start the gluten-free diet BEFORE you are diagnosed because it can affect your test results." After going back on the gluten, my symptoms came back ten-fold. I wish I never knew how good it was off gluten.

    If you want to be diagnosed, then start eating gluten, and lots of it!! If you are pretty sure you know you have a reaction to gluten then stay on the diet and feel good. I only say that because I want to be diagnosed and I continue to suffer while my doctor tries to rule out every other diagnosis first.

    Good luck!!!


  9. I regret to inform everyone that Mystery Diagnosis is "to be continued"

    I went into for my blood test today, after going off the gluten-free diet again and suffering. It turns out the head gastronentenologist of this group wanted to draw blood for the bacteria that causes ulcers (h. ply-something or other). The person at the lab told me she wasn't even supposed to tell me what the blood test was for. Needless to say, I have really bad luck with doctors, I am growing impatient, and I went home ready to give up.

    Should I keep trying? She I challenge the doctor? "Excuse me doctor, I don't have heartburn or grainy poo - it feels like the corner of a table is constantly jabbing into my abdomen. Sometimes, it feels like I am running into the table at full speed. Does that sound like ulcers?"

    The only reason I consider even calling my doctor back is for my children.

    *See you next time on Mystery Diagnosis*

    P.S. This whole reply was done with angry sarcasim due to the frustrating news I heard today. Sorry if I offended anyone.


  10. The best thing I ever did for myself was walk out of my old general practitioners office and never go back. Eventually you will find a doctor that will listen to you or send you to someone else that knows what to do!

    Good luck and keep reading on the site, I have found the information here very valuable!

    Kristen

    Thank you Kristen. I have considered it. And, after this last blood test today, I may even ask for a second opinion. I actually believe that 20 month old daughter may be showing symptoms and I would hate for her to have to go through this so young. If I am not confirmed, then we would have to start all over again with her.

    With the blood tests, I am not sure about "the rules." But, I have definetly been "craming" for my test by eating gluten filled food all day, everyday. I don't know if it works but I hope so!!

    Thanks to everyone for their posts and replys. I truely appreciate it. I hope everyone continues to stay strong and positive!


  11. "I keep telling the doctor I NEED to get better because the symptoms are starting to mess up my life."

    Wow, I say that every time I go to the doctor. We put too much faith and pressure on doctors. They cannot diagnose everything and they don't have the TIME!

    So I defend doctors, but I remember they are humans. The health care in the U.S. is set up for quick obvious things. Broken limbs are so much easier than a mystery illness!

    I agree that doctors are human and make mistakes (and cover themselves so they can't be charged for mistakes). Maybe, they could take alittle time to act more human. I feel like a pay check rather than a patient. I don't know if I have just had bad luck with doctors. I just think it is, well - as childish as it may be, unfair. I just want to get better and know what is wrong. I know many people suffer years without knowing, but I know something is wrong and I am being pushed away because it isn't serious enough.


  12. If you have some time read the signatures of some of the posters on this board, you will see diagnoses for years before getting a celiac diagnosis and with adherence to the gluten free diet many see improvement in all the conditions they contracted prior to celiac.

    I have read all of them so far. It's actually very depressing. I have done my research online and apparently Celiac is on the top ten list for most commonly misdiagnosed conditions. It's just frustrating to tell a professional that "something" is not right and they don't believe you.

    I want the diagnosis so I can test my children for it. If I am not diagnosed then my insurance won't cover the testing for them. It's just hard to wait because I take care of my two children by myself most of the time. My husband is in the Navy and he is constantly gone. He has noticed a difference and even told me, "I want my wife back." I keep telling the doctor I NEED to get better because the symptoms are starting to mess up my life.


  13. So, I have been suffering from mild to moderate abdominal pain for about 4 months now. I have seen at least 10 doctors ranging from ER (for some of the more moderate pains), Ob/GYN, Primary doctor, and now a Gastroentenologist.

    Has anyone else had a doctor not believe that they were having pain?

    I remember one appointment where I walked in, the doctor looked over my test results (just basic blood tests and urine sample), feel around my stomach and tell me that there was nothing wrong. She gave me pain meds and booted me out. I have two children and pain meds make me VERY drowsy so I was quite peeved. Finally, my primary doctor made me do a stool sample (ugh) and some of the antibodies for Celiac were present.

    I have abdominal pain, fatigue, irritibility, and nightmares/unable to sleep. I had the endoscopy done and the doctor told me the results were "inconclusive." Now I have to do the blood test (and I have been on and off the gluten free diet trying to feel better - and it does make me feel SO much better).

    Isn't the blood test supposed to be done first?

    I am so tired of being ignored. Has this happened to anyone else??????