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I Wish I Could Pinpoint What's Making Me Sick


rubyred

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rubyred Apprentice

I apologize if this sounds whiny. Ugh, I'm so frustrated...I was doing so well for almost a year! I went gluten free in Aug of last year and dairy and soy very light. I had even started introducing some cheese and yogurt and seemed to be tolerating that well. I should say, I'm not diagnosed with celiac. My endoscopy showed mild blunting of my villi, which I attribute to the soy (just my own theory because I seem to be pretty intolerant to soy and I was eating a lot of it prior to going gluten-free). What I was eating was working though, which was mostly fruit, veggies, some meat, fish, eggs, rice, and a few processed foods like gluten-free crackers, rice cakes, cereal, etc.

After thinking about it and getting some advice here, I got a second opinion on my biopsy and it turns out, I really don't have celiac (after the doc told me it probably was, he looked at the slides and said it wasn't. And I don't have insurance right now to follow up - I still don't have an answer as to why my villi were blunted). Anyway, after that I just decided to have NGF cereal (2 bowls) just to see. If I don't have celiac, I just wanted to make sure gluten was my problem....and not just soy the whole time or leaky gut or something else. Well, I felt okay for a day or so then felt sick for a week or so. It was also that time of month for me....so I dunno. I haven't eaten gluten knowingly since.

That was a month or so ago and within the last couple weeks, I've started to react to different things I never have before. I think my daily plain greek yogurt caught up to me (?) so I gave that up, as well as any cheese I was eating. So, back to no dairy. After eating hummus, I got GI symptoms. Someone recently suggested maybe I have a problem with legumes, but I can tolerate other beans pretty well. I made some stir fry veggies (onion, mushroom, red pepper, squash, and tomatoes and then baked some potatoes and eggplant) and got sick after eating that.

Could it be the olive oil that I'm sensitive to? Ugh, there's so many things it could be. I guess I need to start an elimination diet/food journal, but I've sorta been hoping to avoid that. I'm sorry for venting....I'm just frustrated. I was doing sooooo well for so many months and could tolerate all the things I'm now reacting to. I think about the 2 bowls of gluten I ate and maybe that could be affecting me?? But then again, I don't have celiac, or at least I didn't when I had my endoscopy. I just don't know. I have some other non GI symptoms, like lately I've been feeling hypoglycemic if I don't eat but my thyroid has been tested and it was fine. And, like I said, I don't have health insurance right now....along with I kinda feel like a hypochondriac! <_<

Sorry for the long, unorganized post. Just wanted to vent.


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ravenwoodglass Mentor

Did you have blood work before you went gluten free and had the endo? If so what were the results? Did the doctor tell you why he negated the same biopsy that he previously said was positive? You did have a reaction to the cereal but 2 bowls is hardly a challenge. Celiac reactions for most of us are delayed reactions, one reason why it can be hard to pinpoint them.

rubyred Apprentice

I did have blood work, but only the Ttg, which was 8 (0-19 normal range). I believe I had the celiac panel a year earlier, which came back negative as well but I don't have those results. That was before I was my sickest though. The second doctor looked at the biopsy reports and said it was most likely celiac b/c nothing else would cause that damage (my words, but he basically said that). But when he looked at the actual slides, he said it was negative. I only got a sheet of paper in the mail saying it was negative. I really wish I could follow up but I don't have the money/insurance at this time.

YoloGx Rookie

Whatever you have (and it could just be a severe response to gluten though I doubt it) it seems to me that the challenge with the cereal really messed you up and made you more sensitive than you were before. Unfortunately that often happens--with celiac. The endoscopy tests are not always correct. I suggest you take slippery elm and marshmallow root capsules to help heal and soothe the lining of the intestines. I also suggest you start taking digestive enzymes --esp. pancreatin and/or bromelain/papain. Alternatively a good plant enzyme mix may do the trick. I also suggest you get some enterically coated acidophilus pronto to help encourage positive flora in your gut. It seems to help against the damage and inflammation too. It is very likely that you now have a (renewed) leaky gut situation that for a while will make you more sensitive to allergens than you were before. Potatoes, tomatoes and peppers are all from the nightshade family and probably you should avoid them for now. A food diary with your pulse and gut responses to what you eat is a very good idea. If its really bad consider going on the specific carbohydrate diet (i.e., no grains or sugars--eat fruit and squash instead--and stevia for sweetner) so your gut can heal better and quicker. Good luck!

Bea

txplowgirl Enthusiast

Hi there,

I have an allergy to the nightshade family and I get all the symptoms you have. plus fatigue. The nightshade family are potatoes, tomatoes, all peppers, bell peppers, black pepper, cayenne pepper, paprika, AND eggplant. I also have an allergy to onions, MSG, Soy, aspartame, and sugar. I am still finding things that I have small problems with.

Also, you may have an allergy to soy, possibly. I agree sounds like the elimination diet is a good way to go.

After several and I mean several different tests. Some were positive some were negative. One day I had celiac the next I didn't. Several years of that then the last test I had was positive. I finally started going completely gluten free and i'm staying gluten free. I should have stayed gluten free when the first rounds of tests screwed everything and I wouldn't have been miserable all of these years.

Anyway, keep plugging along, you'll get there.

ang1e0251 Contributor

I would just assume you have celiac disease and stop worrying about dr's and their changing opinions. You did react to gluten and then, as the PP said, you probably kicked in your leaky gut and now it's unhappy with about everything you're eating.

Back off to a very simple diet until you feel better, noting your food and reactions in a journal. After you're feeling well again, add new foods one at a time a few days apart. You should be able to note which foods you are reacting to. Right now it sounds like you are too inflamed to experiment. Calm your system down first.

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
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    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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