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jeannieknits

Heading To A New Gi Doc, Still Symptomatic.

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I haven't posted in a while, but it seems as though I'm right back where I started. I've been strictly following the gluten-free diet since Summer 2010, with only a few cross contaminations, and the occasional (maybe twice?) purposeful "cheat". Yet I can't seem to eat anything that doesn't feel like I've just swallowed a bag of rocks as they make their way through my digestive tract. I'm only able to tolerate two or three forkfuls of food and then the pain is just too much. Then I'm either constipated for 4-5 days, followed by 3-4 days of diarrhea. Slowly dropping weight, hating food again and wanting to sleep all the time. I can't for the life of me figure out what is doing it.

I'm 99% dairy free, I only drink one cup of caffeine a day, I've eliminated alcohol (but was only drinking 1-2 times a week, and not a lot). I don't do soy. I'm banging my head against the wall.

My original GI doc was the one who "caught" the hemochromatosis (iron overload) dx and then pretty much washed his hands of me, saying that once I was de-ironed (which I'm nearly) I will return to normal....that is that my GI tract will miraculously be healed. Yeah right. So I am heading to a new gastroenterologist in a few weeks and I'm sure she'll order up a bunch of tests, hopefully with an answer at the end of all of it.

Any opinions would be fantastic.

thanks!

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Hope the doctor can give you answers. I was diagnosed myself with celiac two months ago and I am still having symptoms despite being gluten free. Next I tried eliminating lactose, still having issues. Now I am eliminating soy, caesin and eating only naturally gluten free foods. So I am hoping this works. Hang in there, hopefully soon you will have answers.

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Hope the doctor can give you answers. I was diagnosed myself with celiac two months ago and I am still having symptoms despite being gluten free. Next I tried eliminating lactose, still having issues. Now I am eliminating soy, caesin and eating only naturally gluten free foods. So I am hoping this works. Hang in there, hopefully soon you will have answers.

thank you, and good luck to you as well.

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Hope the doctor can give you answers. I was diagnosed myself with celiac two months ago and I am still having symptoms despite being gluten free. Next I tried eliminating lactose, still having issues. Now I am eliminating soy, caesin and eating only naturally gluten free foods. So I am hoping this works. Hang in there, hopefully soon you will have answers.

Sharilee,

You and I are in the same boat. I was diagnosed in late February. Immediately went totally gluten free with only a few suspected cross-contaminations. My symptoms immediately were alleviated but have come back with a vengeance. I now look 6 mos. pregnant rather than just 5 mos. The rash has spread and worsened, and the bathroom problems are back. I have toyed with eliminating lactose; however, I only use about 3 T. of skim milk in my decaffeinated coffee daily. Like you, I am going back to whole naturally gluten free foods. Please keep me up to date on your progress--maybe I can learn from your experiences. I surely hope you get better soon (and me, too)!

Natalie

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I haven't posted in a while, but it seems as though I'm right back where I started. I've been strictly following the gluten-free diet since Summer 2010, with only a few cross contaminations, and the occasional (maybe twice?) purposeful "cheat". Yet I can't seem to eat anything that doesn't feel like I've just swallowed a bag of rocks as they make their way through my digestive tract. I'm only able to tolerate two or three forkfuls of food and then the pain is just too much. Then I'm either constipated for 4-5 days, followed by 3-4 days of diarrhea. Slowly dropping weight, hating food again and wanting to sleep all the time. I can't for the life of me figure out what is doing it.

I'm 99% dairy free, I only drink one cup of caffeine a day, I've eliminated alcohol (but was only drinking 1-2 times a week, and not a lot). I don't do soy. I'm banging my head against the wall.

My original GI doc was the one who "caught" the hemochromatosis (iron overload) dx and then pretty much washed his hands of me, saying that once I was de-ironed (which I'm nearly) I will return to normal....that is that my GI tract will miraculously be healed. Yeah right. So I am heading to a new gastroenterologist in a few weeks and I'm sure she'll order up a bunch of tests, hopefully with an answer at the end of all of it.

Any opinions would be fantastic.

thanks!

Some of us react to the very small amount of gluten in processed gluten-free foods. You may fall into that group..or you may have another food intolerance?

It's really frustrating to give up foods and think you're adhering to the diet, and still not feel good!

May I suggest you keep a log of what you eat (including brands) and note any symptoms you have? Many food reactions are delayed, so if there's another food in question the log will help figure it out.

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Sharilee,

You and I are in the same boat. I was diagnosed in late February. Immediately went totally gluten free with only a few suspected cross-contaminations. My symptoms immediately were alleviated but have come back with a vengeance. I now look 6 mos. pregnant rather than just 5 mos. The rash has spread and worsened, and the bathroom problems are back. I have toyed with eliminating lactose; however, I only use about 3 T. of skim milk in my decaffeinated coffee daily. Like you, I am going back to whole naturally gluten free foods. Please keep me up to date on your progress--maybe I can learn from your experiences. I surely hope you get better soon (and me, too)!

Natalie

Hi Natalie,

Hope you get better soon! I am on day two of not eating anything with caesin, lactose, soy, etc and only naturally gluten free foods. Yesterday was terrible, one of the worse days since being diagnosed with celiac. Today still experiencing symptoms but not as severe or frequent. So hopefully that is a good sign. I told my husband last night I am sick of being sick and not feeling well. I want to feel normal again.

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Some of us react to the very small amount of gluten in processed gluten-free foods. You may fall into that group..or you may have another food intolerance?

It's really frustrating to give up foods and think you're adhering to the diet, and still not feel good!

May I suggest you keep a log of what you eat (including brands) and note any symptoms you have? Many food reactions are delayed, so if there's another food in question the log will help figure it out.

I recently started keeping a food journal, so hopefully that will help, although it even feels like water starts a chain reaction of pain. I was wondering about the "delayed reaction" thing, because sometimes it feels like if I've eaten something, I have the bowel issue 2 or 3 days later. Almost like I can 'trace' it's path, if you know what I mean.

I'm also trying to follow the FODMAP diet...which is prescribed for IBS. if you google it you can see that it limits certain sugars, etc. hoping that will help.

Jeannie.

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UPDATE:

so I had my appointment with the new gastro doc, and it was, I guess uneventful.

She seems mystified about what is causing the pain, as I am. I am going for an ultrasound of my gallbladder/liver this week and then an endoscopy in June, although that would be to really just check for an ulcer or stomach damage as she didn't expect to see any celiac evidence as I've been gluten free for so long.

As I suspected, I've lost weight (5 lbs.) which was not good news, and she didn't really have any suggestions/medications/ideas until we see what's going on after the tests.

so, we'll see.....

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    My own experience with stuttering is limited. I stuttered as a child when I became nervous, upset, or self-conscious. Although I have been gluten free for many years, I haven’t noticed any impact on my inclination to stutter when upset. I don’t know if they are related, but I have also had challenges with speaking when distressed and I have noticed a substantial improvement in this area since removing gluten from my diet. Nonetheless, I have long wondered if there is a connection between gluten consumption and stuttering. Having done the research for this article, I would now encourage stutterers to try a gluten free diet for six months to see if it will reduce or eliminate their stutter. Meanwhile, I hope that some investigator out there will research this matter, publish her findings, and start the ball rolling toward getting some definitive answers to this question.
    Sources:
    1. Toft M, Dietrichs E. Aggravated stuttering following subthalamic deep brain stimulation in Parkinson’s disease--two cases. BMC Neurol. 2011 Apr 8;11:44.
    2. Tani T, Sakai Y. Stuttering after right cerebellar infarction: a case study. J Fluency Disord. 2010 Jun;35(2):141-5. Epub 2010 Mar 15.
    3. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    4. Jäncke L, Hänggi J, Steinmetz H. Morphological brain differences between adult stutterers and non-stutterers. BMC Neurol. 2004 Dec 10;4(1):23.
    5. Kell CA, Neumann K, von Kriegstein K, Posenenske C, von Gudenberg AW, Euler H, Giraud AL. How the brain repairs stuttering. Brain. 2009 Oct;132(Pt 10):2747-60. Epub 2009 Aug 26.
    6. Galantucci S, Tartaglia MC, Wilson SM, Henry ML, Filippi M, Agosta F, Dronkers NF, Henry RG, Ogar JM, Miller BL, Gorno-Tempini ML. White matter damage in primary progressive aphasias: a diffusion tensor tractography study. Brain. 2011 Jun 11.
    7. Lundgren K, Helm-Estabrooks N, Klein R. Stuttering Following Acquired Brain Damage: A Review of the Literature. J Neurolinguistics. 2010 Sep 1;23(5):447-454.
    8. [No authors listed] Case records of the Massachusetts General Hospital. Weekly clinicopathological exercises. Case 43-1988. A 52-year-old man with persistent watery diarrhea and aphasia. N Engl J Med. 1988 Oct 27;319(17):1139-48
    9. Molteni N, Bardella MT, Baldassarri AR, Bianchi PA. Celiac disease associated with epilepsy and intracranial calcifications: report of two patients. Am J Gastroenterol. 1988 Sep;83(9):992-4.
    10. http://ezinearticles.com/?Food-Allergy-and-Stuttering-Link&id=1235725 
    11. http://www.craig.copperleife.com/health/stuttering_allergies.htm 
    12. https://www.celiac.com/forums/topic/73362-any-help-is-appreciated/
    13. Ford RP. The gluten syndrome: a neurological disease. Med Hypotheses. 2009 Sep;73(3):438-40. Epub 2009 Apr 29.
    14. Hadjivassiliou M, Gibson A, Davies-Jones GA, Lobo AJ, Stephenson TJ, Milford-Ward A. Does cryptic gluten sensitivity play a part in neurological illness? Lancet. 1996 Feb 10;347(8998):369-71.