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Crohn's Disease, Help!

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Hello, this is what has been happening to me  http://www.celiac.com/gluten-free/topic/109761-gluten-withdrawal-symptoms/ (sorry for posting so many links!! i do this so i can extend less this post)

 

I APOLOGYZE IN ADVANCE FOR THIS LONG TEXT HAHA, I NEEDED TO VENT.

 

My symptoms have not improved yet, i've had diarrhea for 14 days now, and bright bloody diarrhea for 5 days or so, the blood was a very common symptom for me before going gluten-free, i had a colonoscopy one year ago, it was all normal but they couldnt check the 1st portion of my colon, so i was thinking i may have Crohn's disease in the end of my small intestine or beggining of my colon. (i'll see a doc in a month)

 

The only bad symptoms i have are the bloody D just every time i eat, lots of pain, then i dont eat to stop the pain and get extremly weak.. i have kind of flare ups every several months, these flare ups usually last 1 month, so i think i'll still have this D for 2 more weeks, fun.

It makes it impossible for me to eat, today i only ate cookies, a couple in the morning, a couple at 4pm and a couple some hours ago, i still had bloody D but less frequently and had a lot less pain, i found not eating is the only way to stop the pain.

 

Some hs ago i was really starving so i ate some rice, and the symptoms were VERY BAD, horribly painful bloody D, really bad.

 

I found imodium makes the pain more bearable and made the bleeding stop, but as soon as i stop taking it, all the  symptoms return. (it doesnt work on stopping the D)

 

As you can read in my other posts, im not diagnosed with celiac disease, i started a gluten free diet exactly a year ago, it was a strct gluten-free diet in the beggining, then in january i switched to a not so strict diet for personal reasons, still had not horrible immediate symptoms.

 

In february i ate a lot of gluten cookies for like a week or so, and i got one of this flare ups, i got really sick! i went gluten free again and got the flare up to last only 15 days or so.. this was an improvement since i had only had 1 month flare ups before.

 

In april i cheated a lot, usually one gluten sandwich or so, i got bloated, "normal" pain (compared with the pain im suffering now) A LOT of very bad smelling gas and tons of intestinal weird and loud sounds, i remember i just avoided gluten because i was ashamed of those weird sounds, because i was going to the uni and all the class was silent and my stomach was like: hbeuceeuri hbeqiracdwxmcrei nnvinemdcowcoiinwekjjm grrrrrrrrrrrrrrrrjniewcedc.. I got those symptoms every time i cheated "lightly" (a cookie, a little sandwich)

 

Then in june or july i tried to reintroduce gluten once again, eating it progressively but i failed, it ended in another flare up, i dont remember how much it lasted but i think it was less than a month.

 

I remember that even on a gluten light diet, i got relief from almost all of my symptoms, my hair stopped falling out, the leg cramps and numbness stoped, i gained a lot of weight, the dizzyness also stoped, the rash i had on my feet cleared up, etc, however i still had some symptoms like bloating some days, stomach aches and bearable stuff but i wasnt feeling 100% good so ---->

 

I went strictly gluten free again i think in oct 1st, and my severe acne cleared up.  i think i was glutened 15 days after, but it may just have been a little glutening, just cross contamination, i think it triggered this flare up im still having now, with my classic creepy symptoms, bloody D that wont stop, etc. 

 

Im bleeding and it looks like im dying but my face is clear (lol?) the little in between hours i dont eat and get pain free, im really pain free, no bloating and gas! (maybe a coincidence)

 

So as you can see, my body reacted or reacts bad to gluten, now i doubt it because of the extreme symptoms im experiencing, but then i look back at all the improvements and its clear for me that i have celiac or a gluten intolerance, besides, my mother, grandma and 2 brothers have tons of symptoms of celiac disease, my little brother has a rush that looks like DH, he gets it on his knees and elbows! my mom has always been anemic and was recently diagnosed with hypothidoidism or whatever its spelled.. so i think i have gluten issues.

 

I'm so confused because i dont really know whats wrong with my body, i shouldn't be reacting to nothing this way, this only happened when i ate big amounts of gluten before, and these dont look like normal celiac symptoms, i strongly suspect crohn's disease, i have an appointment with my gastro in nov 25, by that time my symptoms will be gone..

 

This crohns stuff has been driving me crazy for the last couple of days since the idea of a chronic horrible illnes like crohns is the last thing i would wish, i get sad every day (just some hours) when i start to think i'll never be healthy again and that my health is going to get worse and worse with time, that i'll have a higher colon cancer risk, liver and kidney issues (probable) and most of people with crohns eventually need surgery during their lives, then i think of the extremely expensive medications!! there's a lot of stuff going on my mind, mostly because it isnt a disease that can be stoped with the correct medication like other autoimmune diseases, i may get symptom free for some months and suddenly my medication wont work and i'll have to adjust it or change it for another stronger one, then if nothing can stop the inflamation, i'll get surgery, repeat. So there's not basically a way to see if i'll stay as healthy as im now for a long time, some people get retired for disability and i really dont want that, i dont want that life. im 18, i had a lot of dreams, a lot of stuff to do in life and now this happens to me, most people may say you must not but i feel sorry for myfelf!

 

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Hi ceceliac

 

I am so sorry you are having this trouble. Forgive me as I am a bit pressed for time so have not been able to read all your previous posts just now - but  I am so glad you are going to see a gastroenterologist again.  However, I wondered, can you just see your normal doctor to find out if perhaps this bleeding is something as simple as fissures or haemorrhoids that may have developed since your tests last year? When I had very bad D pre-diagnosis I bled exactly as you described and it only took my GP to just examine me in her surgery to confirm that it was actually fissures rather than anything else. Incidentally, at that stage in my journey they knew I was anemic but didn't know I had celiac disease.  The D was excacerbated by strong iron supplements.   I reduced the dose and the D got a lot better - for a while.  

 

All the very best.

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Is there any reason you don't have a DX? Did your doctor refuse to test you or did he test you and it came back negative?

 

I ask because you haven't really been gluten-free long enough to make a difference. You go off gluten, then back on it. If you have celiac you are basically killing yourself by doing that. You say you went gluten-free again about a month ago, but if you got CC'ed 15 days ago you have only been gluten-free for a couple of weeks. That's the way it works with gluten.

 

I think Christiana is right. When you have unrelenting D, you are likely to get bleeding. You need to either get tested, or go TRULY gluten-free. You need to read the Newbie 101 thread so you can learn how to avoid CC. Then you need to be patient. It takes a while to heal, but if you stick with it you WILL heal. But being lax and allowing yourself to get CC'd or to outright cheat on the diet will only make things get worse and worse.

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Hi cristina, thanks for the advice!

 

Are hemorroids or fistulas always visible? even when i feel good? because the colonoscopy was done when i was feeling "normal" without diarrhea and without any blood loss, and it all was normal, not even a little hemorroid, nothing!! 

 

These diarrhea episodes always start slow, the first days loose stools with no bleeding or just little, then normal D and after some days i get that terrible bleeding.. (sorry TMI) 

 

This is confusing, i really hope i dont have crohns disease!!

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Bartful: i dont have a diagnosis because i went "gluten free" or gluten light or whatever before being tested.

 

I know how to avoid CC, ive read a lot about it, i just need to understand i must not eat the stuff my family touched with probably gluten hands and avoid eating out, im working on it, im doing the best i can, i live with 4 gluten eaters who dont believe i have gluten issues and dont respect me, i think now they're starting to understand but it took like 1 year for them to understand i need to avoid gluten, i dont totally blame them for my cheatings, it was my fault as well, because i wasnt sure i had a gluten intolerance so i needed to feel bad to understand or i dont know what i thought in those moments, but my family helped a lot, because they didnt buy anything gluten-free, not even oils (here there are some oils with gluten in them)

 

I got really desperated because i had not had this diarrhea episodes for a long time and im not even sure if gluten caused it at all, the thing is im really gluten free now, if i only had D it would seem more normal, but i really see lots of blood!

 

I'll ask my doctor for another colonoscopy and an endoscopy next month, im sure i'll hav those done in january or so because things are that slow here! but i'll stay gluten free now, it doesnt matter if the endoscopy doesnt show any celiac damage, then i give up on the testing, i dont know what else i can do!! im sure i have celiac or gluten sensitivity, i dont know if i have anything else, thats why i'll have to get more testing done..

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You need to call your GP and ask to be seen. It is possible that what is going on is a food poisoning like salmonella etc. Ask your doctor to do stool testing to rule that out. 

I know it is hard to eat feeling like you do but you do need to get some nutrition in you. Cream of Rice or Buckwheat, applesauce, plain baked or boiled chicken, rice or anything else that is easy on your system might help you keep your strength up until things resolve.

Hope you are feeling better soon.

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Hi cristina, thanks for the advice!

 

Are hemorroids or fistulas always visible? even when i feel good? because the colonoscopy was done when i was feeling "normal" without diarrhea and without any blood loss, and it all was normal, not even a little hemorroid, nothing!! 

 

These diarrhea episodes always start slow, the first days loose stools with no bleeding or just little, then normal D and after some days i get that terrible bleeding.. (sorry TMI) 

 

This is confusing, i really hope i dont have crohns disease!!

 

Don't worry about that sort of TMI on this site  :) !

 

I am no doctor but in my own case the fissure healed very quickly.  Literally loads of bright red blood in the toilet bowl one week, none the next, once I realised that the iron was really excacerbating this D and had greatly lowered the dosage.

 

Whether a fissure would cause a scar visible by a camera after healing I cannot say.   Perhaps it would show, perhaps not.  But a doctor would be able to see a fissure if it were near the end of the digestive tract, near the anus, so I think this is why it might be worth seeing a doctor while you are having this problem.  It could put your mind at rest.

 

Hope this link helps.  

 

 http://www.nhs.uk/Conditions/Anal-fissure/Pages/Treatment.aspx

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    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.

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