Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

mm&j

Advanced Members
  • Content Count

    42
  • Joined

  • Last visited

1 Follower

About mm&j

  • Rank
    Star Contributor

Profile Information

  • Gender
    Female
  • Location
    Pennsylvania

  1. Susie:

    I would recommend getting some B-12 Sublingual tablets. You put them under your tongue and it goes directly into your blood stream. Or you can request some B-12 shots from your doctor. That helped me tremendously. I had shots weekly for about a month, then once a month. Now I take the tablets daily. I am sure that you will see a great improvement in your fatigue and brain fog. I have been gluten free for almost two year and I am about 95% back to normal. It takes time.

    You may need to look into being anemic as well.

    Regarding your backache...It was chronic for me for many years, but after being gluten free, I have had no pain (other than gardener's pain <_< )

    It will take some time to heal and to get your body back. But everyday gluten free is one day closer to better health in all aspects.

    You are such a help! Thanks again.

    I did order some of those B12 tablets so they probably need a little more time to work, (and I have been gardening a lot lately, also).

    I will keep with everything and realize that it does take TIME.

    Susie


  2. It has been 2 1/2 weeks for me of gluten-free eating. I still feel quite "fogged' (now that I understand what brainfog is)...what do you think the time aspect shoud be? I just have no idea as to when I will have my "old" mind back. Maybe never! Maybe I'm still getting some gluten somewhere, or maybe still detoxing, I don't know. I'm still very fatigued and does anyone have extreme back pain? Haven't heard that mentioned much and maybe it is unrelated.

    Thanks,

    mm&j (Susie)


  3. Susie:

    You will soon find, if not already, that whatever you need to know about celiac can be found here, with wonderful support from really great, knowledgeable, giving people.

    From what I've seen so far that has been true, and you seem to be at the top of the list, always answering and helping people out (especially the new ones)

    Thanks...and your goslings are gorgeous!

    Susie


  4. Hi, I haven't been on since yesterday (gardening all day here in PA, just gorgeous today after some snow and cold in late April) and I appreciate everyone who responded. It's really exciting for me :rolleyes: to get answers. I'm new to any kind of message boards and I am getting hooked. I feel better about brainfog. I can relate to it ALL.

    Thanks again,

    mm&j (Susie)


  5. Oh yes, I agree with Nancy and that is a very scary place to be in. But let me add, lack of short-term memory. I am not the same person that I was before I became Celiac, but after almost two year I am pleased to reclaim some of what was lost. I may not ever be 100%, but still working on the rest. That is why is is SO VERY important to be diligent on your diet. Loosing brain cell, kinda sucks.

    It is a common joke in our household, when I get glutened, my husband will ask me if I am dumber today than I was yesterday. I always answer yes. It's a light moment for us to understand each other.

    It is kind-of nice to know that there is a real reason for all the madness!

    Thanks for answering.


  6. Driving down the road and forgetting where you are going.

    Starting a sentence and totally loosing your train of thought.

    Not being able to verbalize the correct word of a discription.

    Not being able to count money back, which you have done all you life and get a blank.

    Lack of concentration.

    Reading and not remembering what you have just read.

    A feeling like you are in a cloud.

    ....just of few of my brain fog happenings or lack of.

    Thanks, I have all of those but I just figured in my case it was because I am 50 years old with 6 and 8 year old talkative girls who have the tendency to never let me have a complete thought without asking for or telling me something. Maybe I'd better stop blaming them and realize it is a part of celiac...just diagnosed 2 weeks ago.

    Thanks again


  7. While doing some online research I found a great article about the molecular pathogenesis of celiac disease. As a molecular biology fanatic, it really bothered me that I couldn't get a clear picture of the molecular steps to this disease. This article really helped. It goes into GREAT DETAIL about all components of the disease. (Although it must have been written before the work on zonulin was published.) If the scientific jargon gets to be too much, then click on figure 5 and it will give you a nice and to the point summary of the disease. :)

    http://www.pubmedcentral.nih.gov/articlere...i?artid=1716218

    Thanks also, I need to understand in detail also.

    mm&j (Susie)


  8. Fellow Celiacs,

    I just finished reading an article in a poplular magazine. Woman's World, May 1st issue. The article is " A hidden food allergy may be making you fat..."

    While any publicity this horrible disease can get is usually a good thing, this article turns Celiac into something that needs to be the next diet trend. There is absolutely no mention of why gluten is avoided, what the disease does to you, and worst of all it states that you don't even need the test to find out, just go off gluten. It also state that " the tests can only detect advanced cases of Celiac disease". WHAT???? They also state to contact this forum for more information on the diet that can help you lose "20 pounds easily"!!!

    I don't know about the rest of you but I am sick of the lack of accurate information the general poplulation see on this disease. I already get comments from people, when I say I can't eat gluten due to Celiac, that show what they think about the disease. Comments like " Oh, are you trying to lose weight?" or "my so and so went on that diet". Then I am compelled to educate that person so they may be able to understand and educate someone else.

    I emailed Woman's World with my opinion of their article (which wasn't a high one). I am calling on all Celiacs that read this to do the same. We need to get the truth out there and this is one way to do it. I feel that if they get a bunch of emails (there's alot of us on this forum alone) regarding this horrible article maybe something will be printed to explain more. Like the fact that we don't choose this "diet" to lose weight, we choose it to live. Chemo and certain prescription drugs can make you lose weight also but you don't see articles saying that you should do this to lose weight. This diet is our only prescription and I don't want to see it become the next hollywood get skinny trend. The book they are telling people to buy is The Gluten Connection by Shari Liebermann PhD,CNS, FACN. Imagine a doctor, that seems to have no clue, giving that kind of information.

    Like I said this article mentions nothing about the disease and the health issues just how to lose weight going gluten free. How many of you have lost weight going gluten free? I know I haven't.

    Here's the email address if you choose to write to them, which I hope you will.

    DearWW@aol.com

    God Bless

    Jodi

    What really bothers me about the "trend" of people without the disease going gluten-free to lose weight is that it won't be taken as seriously when a true celiac person askes for gluten-free. Restaurants, etc. will become more careless possibly if they think people are doing it just for their looks.


  9. Hello all! Nice to meet you.

    I have ended up on this message board after years of searching for a cure for my severe brain fog. I notice many of you mention brain fog as a problem.

    I have not been diagnosed as a celiac, nor do I have any intestinal symptoms. However, I just have this gut feeling that if I stop eating gluten, my problem will clear.

    My question: Is it possible to have celiac disease WITHOUT any of the intestinal symptoms? What other symptoms might appear?

    Thanks so much in advance for all of your great replies.

    Hi, I was just diagnosed last week and never had one intestinal symptom. I always figured that was my one area of least concern because on a medical history I never checked off anything in the gastric area. My main symptoms were(are) extreme fatique and sleepiness, bone pain and weakness. I do, also, experience brain fog, forgetfulness and irritability. The way I was diagnosed was my husband suggested to get my vitamin D level checked because someone where he worked had similar symptoms and had a very low vitamin D level. Mine turned out to be extremely low (so his gut feeling was correct...never disregard a gut feeling) after that my Dr. tested me with more blood-work and found that I have Celiac (although I haven't had the intestinal biopsy, yet) When your intestines are damaged by eating gluten (if you are Celiac) I guess there are so many ways it can present itself depending on what your body hasn't been absorbing due to the disease. I am FAR from an expert, being 1 week into this so if anyone else has any more experienced ideas, let me know, also. Hope this might help a little. It can't hurt to be tested.

    MM&J (Susie)


  10. I sleep all the time. I was just diagnosed with Celiac Disease. I have been oversleeping and fatigued for years. It has become worse now. I am tired all the time all I want to do is sleep. Example today I woke up at 8pm I went to sleep yesterday at 630 pm. So I slept for over 24 hours. I go to work come home at lunch (thank God I work so close to home) and sleep for an 45 minutes. I force myself not to sleep as soon as I get home so I can take care of my kids (ie, sports practice, supper, etc). This is really effecting my work and my being able to go to my childrens sports events. I do not want to be like this. I hate it and I do not know what to do. No one understands this disease in my family. I need some support and help during this time. If I had cancer or anyother disease I would have support. Unfortunately with lack of knowledge on this disease I do not get that from people around me. Help me understand why I am so tired and sleepy ALL the time. How can I stop this?

    Heather, Thanks for writing this. I feel exactly the same. My life since the fall has been getting up feeling exhausted after any amount (even 12 hours) of sleep. I'd get one kid off to school...go back to sleep, get the other to Kindergarten...SLEEP, get them off the school bus...SLEEP, get some kind of dinner...SLEEP or try to get them to do homework and to bed as soon as possible so I could get back to SLEEP. Obviously, my life goal has been to sleep for the past 8 or 9 months and probably I have been this way for at least 5 years. I am so cranky with my family when I am tired and fatiqued that I feel terrible about it. You are right that people don't seem to understand. My family is very understanding about it, but other people who might see me at a school activity, church, etc. can't figure it out because I am functioning at the moment that they see me...noone realizes that there is a pile of laundry to the ceiling, dishes and a dirty house and a rare occasion when my kids will get an actual meal out of me. I was diagnosed on good Friday, last week 4-5-07 and am wondering how long it might take before beginning to feel better after cutting out the gluten. I read all your replies and they have been helpful. Do you plan on having your children tested? Good luck to you.

    MM&J (Susie)


  11. I felt better almost immediately & felt significant improvement in 2 wks. I havn't felt this good in 20 yrs. :P If you read info in my signature, it goes into more detail. I actually have energy now & feel up to doing things like walking to do my shopping, gardening & trimming trees. I had been spending about 3-6 mos/yr unable to get out of my hospital bed & had become dependent on electric wheelchair. What a difference! I am continuing to improve.

    Hope this helps & you are feeling better soon,

    Thanks for responding. I can't believe that you felt as good as you do so soon. It gives me encouragement and hope that I will get to the gardening, walking the dog, etc....things that I used to love to do and now I just feel guilty because they are not getting done. Glad you are continuing to improve and thanks again for writing back.


  12. I felt better almost immediately & felt significant improvement in 2 wks. I havn't felt this good in 20 yrs. :P If you read info in my signature, it goes into more detail. I actually have energy now & feel up to doing things like walking to do my shopping, gardening & trimming trees. I had been spending about 3-6 mos/yr unable to get out of my hospital bed & had become dependent on electric wheelchair. What a difference! I am continuing to improve.

    Hope this helps & you are feeling better soon,


  13. I was just diagnosed with Celiac after 8 months of many doctors. Finally, after I asked for my Vitamin D level to be checked, I got a diagnoses of Celiac disease when my D level was at 13. I had no digestive/intestinal symptoms, just severe fatique, terrible bone pain and weakness were the main symptoms. I'm happy to go gluten-free as I thought the worst and figured that I must have something extremely serious to feel so awful. I just was wondering how long it might be before feeling some kind of physical improvement. Thanks so much to anyone who responds. This is my first time on a message board.