Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

rachellek

Advanced Members
  • Content Count

    26
  • Joined

  • Last visited

About rachellek

  • Rank
    Star Contributor

  1. Let me take a shot at simplifying the gene info...

    HLA - DQB1 allele 1 (0201) - This is HLA DQ 2, subtype 2 or more simply just "DQ2" which is a celiac gene.

    HLA- DQB1 allele 2 (0303) - This is HLA DQ 3, subtype 9 or more simply just "DQ9" which is a gluten sensitive gene.

    Hope that helps!

    Thanks Jukie, now how is a person to know this? I've read through all the FAQ at enterolab and can't quite decifer the gene info. I'm a lab tech, it should make sense to me. Is there somewhere else I can go to find out more? The reason I ask is that a few months ago, I remember someone posting that they had the gene that coded for neurological symptoms (which I have HUGELY) . I should have wrote it down at the time but didn't. Now I want to find some supporting info for that to be my gene (Like I said, I want to make sure and prove to my family that it's not all literally in my head).

    Thanks again,

    Rachelle


  2. Hi, I'm so excited, after a full year and some of problems with doctors, testing etc, I finally have my enterolab results and can say that all my symptoms haven't been only in my head!

    Is anyone an expert on the enterolab testing and what the genetic results may mean. I've read all the information and am still a bit confused as to what I exactly have ie. gluten sensitivity and one celiac gene. Anyone willing to help me interpret?

    This is it in a nutshell...

    fecal antigliadin igA - 40 (normal <10)

    fecal transglutaminase IgA 14 (normal <10)

    HLA - DQB1 allele 1 (0201)

    HLA- DQB1 allele 2 (0303)

    serological equivalent: HLA-DQ 2,3 (subtype 2,9)

    Thanks so much

    Rachelle


  3. Hi, Yesterday I got glutened pretty bad (although it went away much faster than usual for me). All I ate that was suspect was a wendy's baked potato which I put some country crock margarine that came with it on top. I also cheated and stole four of my daughter's fries. What do you think, anyone know for sure if they're supposed to be gluten free? did I make a mistake or was it just cc?


  4. He doesn't understand the need I have at times to just be left alone. How many of you out there need time alone?

    Judi

    Absolutely Judi! I feel so annoyed at little things and just want to escape to a desert island cause I can barely stand myself. I understand you problems with your hubby...see my thread on relationship problems.

    (((hugs)))))

    Rachellek


  5. well, I must admit that this thread has gone in a bit of a direction that I hadn't wanted but that's what happens when you share your dirty laundry. ;) I appreciate everyone's advice. Thanks Gfp for the male perspective and thank you Sarah for that last post, I really do like to hear others' experiences and know I'm not alone. No, I don't need a specialist and no I usually don't have a low sex drive (when I'm off gluten and not feeling as depressed as I have because of my gluten challenge). In the last few days I have been more conscious of my eating and not trusting anything but about 6-7 different foods- nothing processed. Like Sarah said, I think that I need those enterolab results so that he can listen and beleive me and I am going to make a concerted effort never to talk about my health problem.

    I guess what I need to clarify is that when I say we don't communicate, I don't mean about our relationship, and what ails it, I mean that we don't communicate period...no hi, how was your day etc. we can go on like this for a month other than the curse nod and any info to be shared re the kids. You could cut the tension in my house with a knife. And in the meantime, I'm a single parent, coping with everything while he goes about his business like he doesn't have a care in the world. It's so hard not to be resentful and want better! Now, I've tried in the past to talk about things, get him to relax but all that will help is by me saying let's go have some sex. Now, usually by this time, I don't even want to be near him never mind doing the dirty. But it's all that will work. I don't know what makes him go into his cave like this, it's always something different and then like I said, I don't get communication so it's really really really hard to feel passionate and I have done very very very very many occasions like the nike add - Just do it (usually hating it the whole time).

    I think that he's depressed as well because it has been getting progressively worse for two years and each time stretches on like an eternity and is not good for my mental health and the kids. I'm even evaluating what I ever saw in this man. So, these are the challenges that I'm up against and I thank you all for your advice. I think I will wait to make any rash decisions. <_< Maybe read some more self help books,...maybe look into some counselling. I'll hang in there. And thank you all again!


  6. (/quote)

    If you have got to the point of rejecting all intimacy because of where it might lead then this exasperates the problem... your husband needs to know you love him and the more you push away the more and stronger he will feel that need.

    Yes its shallow but its also true.

    You need to ask yourself if this is the real reason, no need to answer to anyone except yourself but you need to be certain you are being completely honest with yourself over this.


  7. Nantzie,

    thank you so much for the reply. I hope too but don't think my story will end as well as yours. I can hope though. I really don't think I have enough energy or mental strength to make a change right now so I'll just keep putting one foot in front of the other like you said.

    My symptoms and testing seem to be very similar to yours. My doctors are making me feel like a hypochondriac because my biopsy showed nothing as well. For some reason only god knows, my husband beleives them over me who knows her body very well and improved miraculously after 6 months gluten free last year and beginning of this year...I should have never let my gastroenterologist talk me into that challenge.

    I am waiting for my enterolab kit to arrive and I'm hoping that when I get results from that my husband may beleive me. I think even if it is black and white, he will still continue to act like the child he is and put his needs first instead of the families'.

    thank you again, you made me feel like there is hope!

    Rachelle


  8. :( Hi, I've been having some problems in the last few months since my gluten challenge (I say some with tongue in cheek)...I started my gluten challenge march 23rd and had my biopsy June 23rd. It seems that everytime I'm turning around I gluten myself inadvertedly (I think since intentionally eating it I've become so much more sensitive...either that or I"m reacting to other things as well -MSG for sure ) . Anyway, I've been a basket case. IE. stomach problems non stop, headaches, nausea, irritability, brain fog like you wouldn't beleive, negativity like you wouldn't believe, depression etc etc. This has been a real test of my relationship with my husband. I find that he doesn't entirely beleive my symptoms...I think if I had something visible that he could see like vomitting or visible bloating, maybe some hives or the DH, he might believe me. Either way, he's at the end of his rope and is not helping me at all in the way of support with the kids, job etc. I can't stand to have any intimacy because my stomach and all things connected are sooooo sore. My relationship is really suffering.

    Now I would like to know if any of you have or would make any kind of permanent decisions or actions in this state of mind. I know you don't know me and may not want to give advise. All I can tell you is that I"m very very unhappy and thinking back, feel that our relationship hasn't been that strong for years and this may be the straw that breaks the camels back. Should I make a change while I'm feeling so brainfogged and depressed? Or continue this way even though I feel that he's hurting my emotional health and maybe impeding my healing? Have any of you made life altering decisions like this when in a gluten crisis. (In case you're wondering, I have three small children- I think if I had less family stuff to worry about, I may be able to concentrate on what goes in my mouth and not gluten myself.) :(:(

    I have to tell you how immensely helpful the forums have been. Most days I don't feel good enough about myself to post a question so I just read and it seems like every time I've been able to find someone who's going through the same thing as me. I want to tell you all thank you. I really needed this support and think I may have gone around the bend without it. I really do feel alone and the forums help so much.


  9. This thread is wonderful and has answered many questions regarding my "{moods" that I've had in past months. I'm glad that I'm not alone. I feel the need to just be left alone so much and struggle with trying to suppress it in order to make my family happy but in the end I'm just miserable. I've found since going gluten free that when glutened, I am a completely different person. I've lived this "other" person my whole life and am just beginning to see the real me. I always had a diffucult time living in the moment and truly appreciating small things. I was always obsessing about unimportant details in an attempt to gain control of my life.

    I always thought that my need for solitude, my moods, my depression was just that - depression. I now know that I am not the "shy" person I always thought I was. When glutened, I am so critical of myself that I can barely interact with others for fear of their ridicule, talking about me behind my back etc...paranoia! I even go so far as to not say hi to people who I recognize because I think that they won't remember or don't like me. I'm recognizing this in myself now and when glutened and when it happens, I tell myself it's just the gluten but it's hard to live through. I hang on, hang on and then in about 12-18 hours of being glutened, it goes away and I'm me again. My body just sighs relief...I really do agree with most that say the brain fog and neurological symptoms are the least tolerable of symptoms. Why does this happen? Is it a matter of vitamin deficiency, villi damage, toxic sludge flowing through my veins...what? I would love to hear your feelings on this!


  10. I am at the five month mark and have been feeling really rotten too. Hair falling out again, skin breakouts, practically everything you mentioned here. I cut out dairy (casein) in March and corn last month. I also quit the vitamins because I thought there was some problem with them. I have the terrible heart palpitations and am very nervous. Something else worrisome is a tingling and numbness in the side of my face with little muscle spasms in the corner of my mouth. I was at a very low point last night with this and was up till 2 am. It seems whenever I am going through some kind of weirdness, there is always someone on here who is going through a similar problem. I am going to go back to four or five foods and start my journal all over again, before I set foot in another dr. office just to be treated like a hypochondriac. I just cannot deal with that treatment emotionally right now. Thanks for letting me vent and for sharing. Take care :)

    Robbin, Why do doctor's do this? I've been having the same problems with mine as my biopsy showed nothing (duh - I was too sick to do my gluten challenge). According to my gp, food intolerances "don't exist" and I don't have celiac...they think that people are stupid and that we don't know our own bodies. It's very frustrating to feel the way I feel and have no one listen to me. I understand you and feel for you, don't let your doctor get you down!


  11. Now, on the topic of odd cures for celiac and food intolerances, has anyone seen a naturopath who used magnetic resonance therapy to cure food intolerances? I've been treated 4 times at a cost of 25$ each and he wants me to continue. I don't think I will. Basically what it is is a machine called a biocom machine (engineered in Germany) which measures your bodies (organs) response to an offending allergen. He can test for virtually anything...msg, pet dander, food dies, preservatives, etc etc etc etc. Non invasive and very easy. He determined what I was allergic to and then proceeded to reverse the signal that my organs sent out thereby "canceling" it out and in effect curing me of these allergies. He says he can cure even peanut allergies, hay fever you name it...sometimes it takes years of treatments and people may need to come back yearly or semiannually for a "booster". I know it's a shot in the dark but I thought I would try it, I really had my doubts about curing the wheat and gluten but I do feel like my lactose intolerance is better since. I just wanted to know if anyone else had ever done it too.


  12. I am about to get my adrenals checked. I am going to have a morning and evening cortisal test done. Adrenal dysfunction can cause blood sugar issues, which I have among many other things. I'll keep you posted.

    Now, I must be doing something wrong, my doctor just isn't listening to me. How did you get your doctor to order these tests? Was it his idea, did you tell him" I think something's wrong with my adrenal gland"? Help me here, I don't know how to approach doctors anymore.

    Sounds like you're on the right track and I wouldn't be surprised that your results would be abnormal, when I first became aware that I had a problem (not even suspecting celiac) my adrenal gland was the main problem, my abdominal symptoms were undercontrol then.

    Good luck,

    Rachelle


  13. Hey, Rachelle,

    Have you actually had adrenal gland malfunction diagnosed? Because those symptoms you've attributed to adrenaline overload are exactly those that I am experiencing when I have an insulin reaction--low blood sugar (I'm a long-term type one diabetic). You mentioned that you have had hypoglycemic issues, so that in fact may be what it all is, and not related to adrenaline. I know that the early morning, when you say you have these symptoms, is a very common time for hypoglycemics to experience low blood sugar, and a sudden scare can also cause BS to plummet. Just a thought.... :)

    Well, as far as diagnosis goes, I feel like I've been doing alot of that on my own with the help of a naturopath. so, yes 8 months ago according to him I was in complete adrenal burnout, now in the last few months I've been experiencing hypoglycemia symptoms so, I went to my gp and explained to him. He recommended my getting a glucometer and test. I've been testing anytime I feel the classic symptoms and it's usually a few hours after eating. I feel like my heart's racing and very dizzy, then I crash and need to have a nap. Once I even felt like my eyes were all hot and blurry, I thought I might pass out, even had tunnel vision. Well, I tested and my glucose was 4.5 mmol/L. He said that this number wasn't low enough even though I had eaten a full meal and a chocolate bar. I feel like I'm on my own and am sure that I do need an endocrinologist but he said he wouldn't send me unless the numbers showed it. I asked him if he felt my adrenal gland symptoms may constitute sending me and he said he had no proof of that either. I'm getting very frustrated. So, because my glucose isn't that low, I'm feeling that my adrenal gland may be the problem most of the time, but in some instances, I know that I am becoming hypoglycemic as well. Does that sound right to you? I am trying to be better about my sugar intake, but thought that I should be a little reckless in order to have proof to show him. GACK, this is driving me crazy! Why can't my body just be normal? :angry::angry::angry:


  14. Well, two weeks ago I began my "gluten challenge" and only lasted about four days before becoming so ill that I phoned my gastroenterologist to tell him my symptoms. I thought it was a little funny that he said he would "allow" me to discontinue the gluten. Like I need his permission :lol: Anyway, a week and a half later I continue to experience hypoglycemia after eating anything. And for the last three days I'm sure that I'm back into adrenal gland burnout...one of the first things I experiened 8 months ago which caused me to evaluate my diet and determine that wheat was a problem.

    Well, my question is -is this unique to my body or do many of you experience adrenal gland symptoms when you get glutened. . . ie... surges of adrenaline when you wake up in the morning or get a little scared say while driving etc.(I literally wake up like a siren is going off in my head...I almost hit the ceiling and then I feel so shaky I could fall over) A feeling of absolute exhaustion in the morning and early afternoon, dizziness, lightheadedness, forgetfullness... Not a lot of fun let me tell ya on top of all my abdominal syptoms which are still hanging around. This from only a few cookies, a chicken nugget and some breaded fries.

    I'll make it through, right? I will be healthy again, right?

    Rachelle :(


  15. Approach colon cleansing with caution...some of the cleanses are harsh and might only aggravate your system. One of the best ways to "cleanse" naturally and without harsh herbs or chemicals, is psyllium. Psyllium is an all natural fiber supplement that expands, absorbs liquids and pulls out old stool and toxins. That would be something pretty safe for you to look into. Since it is just fiber also, no laxatives, you can use for a long period of time.

    I was just wondering what your experience with psyllium is...I get so constipated any time I attempt to take it, even if I drink the recommended water. I have IBS as well and have been told by a few doctors to take psyllium regularly but it just gets me into trouble when I try. Same happen to you ever?

    Thanks,

    Rachelle


  16. Hi, I've heard mention below of a full panel of blood testing for Celiac and am wondering what those tests are. I've had ATTG, vit d, b12, different things but is there an other test for the antibody factor of the disease? At the time of my testing I had been off gluten for over a month and the test was negative. Would it have been negative anyway had I been eating gluten or is a month long enough to make a difference? Thank you!


  17. Hi Celia, I understand what you're going through, the exact thing happens to me. I told a friend yesterday that when this happens I feel like a diabetic who just ate a huge chocolate bar and has no insulin to inject myself. Does anyone think there will ever be an antedote like insulin that we could inject to get us through? An Celia, had you gone to emergency, what would they have done for you besides hydration? Do you ever feel like they (doctors) think you're crazy?

    I'm so thankful for this site. I was made to feel that I was the only celiac in the world to have neurological symptoms. I'm so glad I'm not alone, you aren't either (((((((((((((((((((hugs))))))))))))))))))))

    RAchelleK


  18. Hi there, I have weight gain and my naturopath tells me it is because after years of this problem, my adrenal gland is secreting way too much cortisol (a stress hormone) and therefore weight gain. My symptoms have been very atypical too and my doctors are very confused and disbelieving. weight gain, constipation instead of diarrhea, most of my symptoms are neurological and I went through 2 years of bad migraines. My only advice to you is to have the biopsy and diagnosis before going gluten free because once you have and are feeling so much better it will be near impossible to eat the gluten in order for a proper diagnosis (this is the boat I'm in right now).

    Good luck (((((hugs))))))) Rachelle K


  19. Campbells "ready to enjoy Fiesta vegetable" Here is a list of ingredients so you can tell me what I've missed....water, carrots, celery, rice, tomato, calcium chloride, citric acid, corn, black beans, tomato paste, sweet peppers, chili peppers, pea beans, potato starch, msg, sugar, salt, dehydrated onions and garlic, canola oil, spice. - it's the spice isn't it. as the lightbulb goes on above my head. I'm such a dork. I did think it was too good to be true.