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Maddi

Abdominal pain

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I'm self diagnosed since every test doctors have taken has come back fine. Well, I've been gluten-free for a month and I've now ventured a little further into my diet (I've eaten raw garlic & onions with my winter squash, raw garlic with my guacamole and eggs quite a few times). Well my tummy pains had disappeared but now they're back. Yesterday my chicken did have garlic so now I'm wondering if that's the cause. Could I garlic be too harsh for my tummy at the moment? Even before going gluten-free my tummy wasn't hurting this much. 

Also, how long until stools get better? I've been sick for almost 3 years  (I think...could be a bit more) with increasing stool problems and my bm's getting worse last year (frequency issue and looser stools). I'm now feeling depressed bc my stools haven't improved much yet after 1 month gluten-free (even though I have had CC accidents) Is this normal? ): I just want to be back to myself again. I also haven't lost anymore weight bUT I haven't gained any weight either.... am I being too impatient? Thanks guys.

Edit: Another thing that I've been eating is peanut butter...could this be my problem? 

Edited by Maddi

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It could be anything. At one month in it isn't unusual to have pain or loose stools for no reason at all. A food could be fine for several meals and then out of the blue for no good reason, it (or something)  will make you sick. For example, I could not tolerate sweet potatoes for several months. I switched to organic for a while and those were OK. And it took YEARS before I could tolerate blueberries, organic or otherwise, and my reaction to them was more violent than any reaction to gluten. One day I'd eat some asparagus and be fine. The next day I'd have some more and be sick. It's a real rollercoaster at first. Just stick with it and try (I know how hard it is!) to be patient. You're going to get there.


gluten-free since June, 2011

It took 3 !/2 years but my intolerances to corn, soy, and everything else (except gluten) are gone!

Life is good!

 

 

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It just takes time. You need to be patient. As you heal things will get better. it took me 3 years before I gained weight. Hang in there.


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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Thanks. I guess it's just harder since I'm self diagnosed. I'm going to see my gastro again this week. Though I don't even know for what since he isn't listening to me.  I have a colonoscopy scheduled but I have this epstein barr virus so I think I'm going to reschedule until I get over this. In the meantime I think I'll ask for maybe sed rate and fecal calproctin levels. To feel maybe more at peace with it being celiac and not something like crohns. Although my stools are just yellow and I've never seen any blood in my stools... but just to make sure. Lately I only go to the bathroom 1-3 times a day. So it's not very frequent but it is a lot when I go. /: (sry if tmi). I had sed rate in March and it was normal. But I guess it wouldn't hurt to recheck. Oh and I do know that usually Crohns is associated with pain in lower right and my pain is around my belly button and on the upper left and right of my abdomen. But I also know Crohns can happen anywhere in the GI tract. My gastro just keeps telling me that there's nothing wrong with me.  That I just have IBS and maybe food intolerances. Ughhh. 

Edited by Maddi

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No I haven't had allergy tests done. I am casein intolerant since last year. I can't tolerate Lactaid so I'm guessing it's casein. It makes me incredibly fatigued. I was incredibly healthy until I was 24. Then I got ill with a gi virus and I started feeling very tired and my stools became yellow for the first time ever after having perfect digestion. They were still firm and everything loiked normal except for the color. I had low b12, folate, and vitamin D. Oh and my bilirubin was slightly high. Then I traveled oversees and got sick with travelers diarrhea. I got over that but was left really weak and kept getting infections every single month. I felt really sick all the time. Yet, i had this insatiable hunger. Then, last summer my stools got very frequent. I was going up to 6 times a day but it wasn't diarrhea... just loose. Fast forward to this spring and my stools got very very bulky not loose very well formed but hugeeee with undigested food in them. I started getting anxiety too and depression for the first time ever for no reason. All my blood tests came back fine. ANA / Sed rate/ RA factor/metabolic panel...EVERYTHING except for low-ish vitamin D. I started getting hot flashes/feeling extremely confused/extremely fatigued in addition to my tummy problems. . I removed gluten. .. fatigue gone. Anxiety gone. Hot flashes gone. Then my doctor tests all of my antibodies and sees that my IGM is high... but Celiac panel is negative. Then runs mono tests and the Epstein Barr virus is currently active in my body. But I know this has something to do with my GI issues.I've felt so tired in the past 2 years and then it turning into severe fatigue this spring (fatigue where my entire body was fatigued even my limbs and I thought I'd pass out every time I walked, that disappeared within 3 days of being gluten free) I had an endoscopy last year (but they only took 3 biopsies) and that came back negative. I've had parasite stool testing/testing for SIBO/so many blood tests/the endoscopy/HIDA scan to check my gallbladder and liver/barium swallow/ultrasound of my pancreas and gallbladder/they've checked my thyroid panel 3 times in 6 months all came back normal/They've checked my vitamins all came back normal except vitamin D.

So the doctors are stumped. And they say it's all in my head (it's anxiety or stress)... yet here I am a 26year old woman weighing 96lbs with crazy hair loss and fatigue (it's gone now after going gluten-free but it was so horrible I thought I was dying), extreme GERD for the first time in my life, tummy aches, weird stools, nausea, this reactivation of a virus I never even noticed I got the first time, multiple infections in one year, problems with my bladder, I've had a gallbladder attack once while I was 105lbs, I have a mild fatty liver again I was am thin, bad muscle aches (most gone now after going gluten-free) Yet on paper I seem healthy. Well except for the 96lbs that my GI doc isn't even worried about. /: I think I'm going to switch GI docs...I like my doctor but he isn't listening to me. He spends his time with me (about 15-25 minutes) but he just blows off everything I tell him bc all my tests come back perfect. I know I'm still absorbing some foods or the multivitamin I'm taking because my vitamin levels are fine and my vitamin D went from 26 to 31 in 6weeks. But I'm not absorbing everything bc it's hard to gain weight!

My aunt has fibromyalgia and is gluten intolerant (never tested for Celiac). My grandmother has had GI Issues all her life (chronic appendicitis so they removed it, gallbladder out bc it wasn't functioning no stones, now she has IBS and diverticulitis, and she's also milk intolerant bc it gives her the runs even though she drinks lactaid). She and all her sisters have hypothyroid. My grandmother has osteoporosis and her hip is about to break at any moment even though she drinks milk twice a day and takes her vitamin D. I must say though I wish I had half of the energy that woman has. (: She's 81 and she's never in bed during the day! She's always out! She does have a horrible memory though. Sigh anyways I think my issues stem from my dad's side of the family. I'm not sure what it is but I know there's something wrong with my small intestine. 

Sorry for repeating some things. .. I'm just at a loss for what might be wrong with me. I know I react negatively to gluten but I don't know if I'm a freak of nature and this is Celiac despite negative blood tests or if this is something else. I want a repeat endoscopy but I have a virus right now and don't know if I should wait or not. I've only been gluten-free for 1month with mistakes so I doubt that this will affect it that much. Sigh no matter what I am going to keep fighting until I find a doctor that listens to me. 

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