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Eclara

Member Since 02 Sep 2012
Offline Last Active Aug 13 2014 06:11 PM
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Topics I've Started

I Screwed Up

21 March 2014 - 03:52 AM

I have been as gluten-free as possible (living in a mixed household, have my own cookware) since my negative biopsy 16 months ago. Ever since the gluten trial I did beforehand I am intolerant of almost everything but especially grains. I eat about as well as can be expected. I'm on a kind of paleo I guess, all meat and vegetables and small servings of fruit, except with my food problems my meal plan tends to be breakfast: chicken with spinach, lunch: chicken with kale, dinner: chicken with carrots, heavily supplemented with bananas throughout the day. Shampoo, rinse, repeat. Sometimes I sneak some egg whites into the mix, sometimes I can't stomach the thought of more chicken so I just have the vegetables. Sometimes I just don't bother to eat at all. Things are definitely better than they were when I was eating gluten, but still bad. I keep losing foods, I'm bloated and nauseous, I have extremely bad gas and unpredictable, foul BMs that lean more towards constipated. I just feel generally unwell and I'm not sure why I'm not getting better. The last gastro I saw put me on rifaximin to see if it was some kind of bacterial overgrowth.

I'm on day 9 (of 14) of the rifaximin, and it has worked in unexpected ways. I have less gas, and when I do have it it no longer smells like it could kill a man. Same with BMs. It also put an end to the maddening throat pressure I was having that I assumed was some kind of reflux. While my rosacea is still pink and flushy, the skin puffiness has reduced so much I look like a different person, and my skin has lost the orange peel texture. My ocular rosacea is no longer permanent, it shows up sporadically and generally goes away with eye drops. The skin on my body is less dry, bumpy and blotchy. My feet and hands no longer constantly glow bright red. The hollow, severely purple undereye circles I've sported for years have also started to improve drastically and my hair and nails are stronger and shinier. It took about three days of feeling weird and adjusting, but I noticed for a few days that my stomach felt a lot better, less 'full' feeling, especially just after I'd taken the pill. Not miraculously so, but I had really high hopes.

Unfortunately, I made the horrible decision to try out (gluten-free) grains again a few days ago after reading on a forum that the rifaximin needed higher carbs and sugar to draw out the bacteria. And after all, if I wanted to permanently incorporate them into my diet, why shouldn't I get started while my system had a boost? It was a bad call and I knew it, I was just so desperate for real food that I threw caution to the wind. It immediately triggered my binge eating (which I haven't struggled with at all since going grain free) so I went into grain overload. I felt the way I did when I was doing the gluten trial- extremely foggy, confused, lethargic, achy, and bloated to the point I was in so much discomfort I thought I could die. At least I didn't throw up this time. It was the worst I'd felt in ages and it took me 3 days to get off of them again. I'm horrified with myself and I think I've caused some damage. Worst of all, I think what I've done has set me back too far for the rifaximin to handle. I'm back to eating my usual but I keep feeling really ill, like it's undoing everything that's improved since I started taking it. I'm so scared. I know that if this course ends and I'm not cured, my gastro will immediately move on to "see, you have IBS! let's get you on some antidepressants". She said as much last time we met, the rifaximin was a last ditch effort.

I just feel so lost.
 


Getting Desperate

13 September 2013 - 09:30 PM

I was gluten-lite for about two years before I did an 8 week gluten challenge for an endoscopy in December. I had horrible symptoms the whole time, but my biopsy came back negative. I went gluten-free the day after the endoscopy, so it's been 9 months completely gluten-free. It took awhile, but most of the symptoms cleared back up. But I developed upper stomach symptoms during the trial that haven't gone away and have gotten worse and worse. I kept losing foods- dairy, then eggs, then grains, then fruit...I got to the point where I was eating plain lunch meat for half of my meals, and peanut butter mixed with kefir for the other half. Now I can't eat anything without bloating and getting nauseous, and I can't figure out what's a legitimate intolerance and what's just my stomach. My stomach has shrunk so much I can eat maybe a fourth of what I could before, which absolutely doesn't help.

I've been to three gastros and one normal doctor, and none of them have believed me when I told them eating gluten triggered this. None of them even believed me when I told them I was gluten intolerant, or that I was having trouble with other kinds of foods. One diagnosed me with acid reflux and put me on acid reducers, which made it worse. One diagnosed me with bile reflux and put me on Carafate/sucralfate, which seemed to help for a week before it stopped doing anything. One diagnosed me with IBS and suggested anti-depressants, which I (somewhat) politely declined. The last one (the one who actually told me to do the gluten trial in the first place) literally shrugged and told me to "keep doing what you're doing". My CT scan came back normal, the ultrasound of my gallbladder, liver, and upper and lower intestines came back normal, my HIDA scan came back at 80% with no sign of bile reflux, and the only thing that showed up on my colonoscopy/endoscopy was "mild chronic gastritis", which I was later told was too mild to cause symptoms? I'm losing my mind with this. I've been searching for a doctor to go see, but I just end up giving up after awhile because I really don't know if I can handle another doctor talking down to me and dismissing everything I say, and I don't know how to determine who will actually listen. Even my mom has now started to question if it's "in my head".

I don't even know what I'm asking. I just don't know what to do. I've stopped believing that I'll get better and I'm extremely depressed, I can't do this anymore! What should I do? I feel so lost.


Archer Farms Ground Ginger

03 September 2013 - 05:33 PM

I've been feeling extremely off for the past week or so. Originally, I thought it was leftover from agitating a different food intolerance earlier in the week, but the symptoms are very different. The only thing I changed in my diet was that I started using quite a lot of Archer Farms ground ginger. I read online that they sometimes add small amounts of flour to ground ginger to keep it from clumping, but the only ingredient listed is ginger. I tried to email Target, but they have a massively confusing contact system and I couldn't find a category for food inquiries. Has anyone here had an experience with this product?


Extreme Depression As A Reaction

26 August 2013 - 10:11 AM

I had a TERRIBLE reaction to the "Food Should Taste Good" sweet potato chips, and I'm not sure why.

Ingredients: Stone Ground Corn, High Oleic Sunflower Oil and/or Safflower Oil, Sweet Potato, Corn Bran, Evaporated Cane Juice, Sea Salt

I've eaten these chips on several different occasions, but I always had something else I blamed the reaction on. Twice I thought I had been glutened, but this past week it would have been highly unlikely so I looked back over and realized they were all times I had eaten these chips.

The reaction each time started out as strong brain fog, which grew worse every day and made me really angry and severely depressed, to the point of suicidal ideation. I got extremely tired and had bad stomach pains, bloating, muscle pain/weakness and diarrhea. I took a charcoal yesterday while in agony after eating the chips, and half an hour later the depression began to lift. Today was the first day I didn't eat them and my stomach is still a little messed up but overall I'm okay.

But now I'm completely terrified at how much it affected me mentally. I was so depressed I could barely speak. I haven't felt that bad in years- I wrote a suicide note! I'm really worried about how completely it had me under its spell, and I'm afraid to try new things for fear of what it will do to my mental state. I don't even know which ingredient it was that did it, but I'm assuming either sweet potato or corn. How is it possible that food can do that to a person? Has anyone else experienced this? How do I determine which ingredient it is without putting myself at risk?
 


Twin Cities (Mn) Recommendations?

23 August 2013 - 03:03 PM

Anyone have any recommendations for gluten intolerance and celiac-educated doctors, particularly gastros, in the Twin Cities and the southern surrounding areas? Basically anywhere between-ish Lakeville to Minneapolis. I've been to three doctors in the MN Gastro chain so far, and I don't know if I just happened to pick the worst ones but they were enormously unhelpful. But if you have a specific doctor from that chain, I'd be willing to try going there again! I also know the Mayo is nearby but I don't think I would get in because my symptoms are not as severe as other people on their list, and I've already had an endoscopy which came back negative.

 

I just need someone who won't immediately dismiss me when I tell them I have lasting symptoms from my gluten trial 9 months ago. So far they've all taken one look at my IGA and biopsy results and told me there was no correlation between gluten and my symptoms before wildly attempting to push drugs at me.

 

Any recommendations would be a big help! Thank you.