Celiac.com Sponsor (A1):



Celiac.com Sponsor (A1-m):


rubyred

Advanced Members
  • Content Count

    44
  • Joined

  • Last visited

About rubyred

  • Rank
    Star Contributor

Profile Information

  • Gender
    Female

Recent Profile Visitors

4,409 profile views

  1. I was excessively hungry for several months before going gluten-free. It got progressively worse..and I was always craving cereal and wheat-y foods. It was pretty miserable because every time I ate, I'd feel so full, bloated, gassy, and just total discomfort but my stomach would be empty within an hour of eating and I'd feel like I needed the food. Vicious cycle! After going gluten-free, my hungry eventually subsided and I don't crave cereal at all anymore. (and when I say crave, I was going through a box a day! It was almost all I was eating). I'm not sure about your other questions, though.


  2. I didn't think there was anyone else like me out there! :o

    I have almost all of the same issues as you! I'm gluten, soy, and dairy intolerant and have recently stopped eating almonds, walnuts, and pistachios due to GI symptoms. It basically feels like I've been glutened when I eat these nuts now, which for me is stomach rumbling, tummy discomfort, D, and bloating, and GAS..ugh. I'm so disappointed because I relied on nuts for healthy snacks. I find that when I eat some foods in excess, I seem to develop an intolerance. I'm so frustrated. I've already given up peanut butter, hummus, and dates...and I think it's because I just have eaten too much of it in the past. Now it's nuts....makes me wonder, when will it stop? Or is there an underlying problem that needs to be fixed? Ugh, I don't know. Just wanted to say I relate to you and I feel your pain!!


  3. Gfresh- I can definitely relate to you. When I was my sickest and couldn't keep anything in my stomach (D after everything I ate), I ate very little to be able to get through the day without incident.........and consequently, I had major insomnia. I've never had sleep problems before and I take no medications. I used to have no problem falling alseep, but would wake up at like 3am and not be able to fall back asleep til 6am. It was pretty bad. Now, when I find I haven't eaten enough throughout the day, the same thing happens. I have no studies or science to back this up, just my own observations with my body.

    I'm sorry, I disagree with Deb. Maybe you DO need those calories. I agree that the calories could come from somewhere healthier than junk food (although depends what you mean by junk food...dark chocolate is good), but more bananas, grapes, etc is not the answer if that's what you already say you're eating. I imagine you are already eating fruits, as you say. I would suggest adding nuts (maybe some almonds) into your diet. I know you say you have problems with fat digesting, but I think you may need to try to add some healthy fat into your diet, since it seems like it's high in carbs. Or maybe experiment with protein? Do you eat beans? Maybe you could dip the veggies you eat in a bean dip? That will add calories if you normally eat your veggies plain. What about nut butter? You can eat very little of that and up your calories a lot.


  4. Do any of you experience abdominal pain if you don't take probiotics for a few days in a row?

    I went away last week and forgot my probiotics. I didn't take them for about a week. The last 3 or 4 days of that week, I started feeling a gnawing pain in my lower left abdomen. Also, I felt bloated. It wasn't a stabbing pain really, but it hurt enough to keep me from exercising. I felt hungry but my stomach felt so full I didn't want to eat much. I thought that maybe I ate gluten, but this has never been my symptom (usually it's D, gas, gurgling, etc but definitely never this kind of pain).

    I bought more probiotics about 2 days ago and since I started taking them again, I haven't felt any pain. Could it be that the lack of probiotics caused this pain? And what exactly does that mean? Am I always going to have to take probiotics to even out the bacteria?? That seems crazy that without adding good bacteria, my body isn't regulating itself?? Any ideas? Thanks!


  5. A few hinters about eating gluten-free-

    -start out simple. Think fresh fruit, veggies, eggs, plain meat (you can season with salt and pepper or mix in with veggies, etc. Just try to avoid sauces at this time until you get a hang of it), plain fish, nuts, rice, potatoes, corn, rice cakes, beans, plain popcorn

    -I might avoid a lot of the processed "gluten free" foods that you've already bought. Not saying you can never have these.....but in the very beginning, it might be best to start with natural, whole foods. I would then add in the processed foods in slowly and see if your stomach can handle them at this point

    What really helped me was stripping my diet down to the basics for at least a week or two. Then you can definitely add in more things. Not sure if you have intestinal damage, but I had inflammation and this helped soooo much!


  6. Hi there! Wow, that is kinda weird that your doc looked at your results and came to that conclusion. I'm all for people listening to their body and doing what they think is right for them....but as far as I can tell, your blood work looks negative. That being said, I had negative blood work too. I also had a negative biopsy (well there was damage and inflammation but apparently not damage suggestive of celiac). I went gluten-free anyway because my symptoms were getting so bad, I just had to try something. Well, when I am 100% gluten-free, plus soy and dairy free, I feel great!! I may or may not have more intolerances (trying to figure it out- so frustrating!!).....but point is, I literally saw a 180 difference within one day of going gluten-free in the beginning. I could DEFINITELY tell! So my advice, give the diet a try...........or if you want to continue with the testing for celiac, schedule an endoscopy while eating gluten. Either way, good luck to you!!! I hope you find your answer......I know exactly how you feel about wanting an answer, even if that means you are diagnosed with a disease.


  7. FWIW, I used Enterolab and tested positive for malabsorption too. But, I was told by 2 doctors that I don't have celiac, even though my endoscopy showed mild blunting of villi. I think soy was causing the villi blunting?? Leaky gut?? I really don't know, never got any real answers. I also had gastritis and my stomach lining was atrophied. I've been gluten-free for a year now. Still don't know what to say to some people sometimes - do I have gluten sensitivity? Did I catch celiac early? I have the gene so I figure even if I don't have celiac, I still need to continue eating gluten-free. I can't really answer your question, but just wanted to share my experience.


  8. 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.


  9. 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.


  10. Wow, so many people here react to so many foods!

    I have intolerances to:

    gluten

    soy - I believe this caused my blunted villi, so not sure if this would make it an allergy or not.

    dairy

    dates

    and trying to figure out if I have an intolerance to legumes? I react (GI symptoms) to peanut butter and hummus (in addition to soy) and someone just mentioned that the connection could be legumes.

    Jerseyangel (or anyone) - can I ask how you react to legumes and how you figured out it was that whole family you react to?


  11. Thank you sooo much FarmCat and TFA............and sorry for taking over your thread Blondie.

    You guys have given me a lot to think about and really helped me see other possibilities that I was not considering. I now see the connection and am going to look into legume family intolerance. Also, I will look into fructose intolerance. Ugh, this is hard work!! I don't think I have allergies, just intolerances; I wish there was an easy way to test for intolerances!


  12. I feel your pain..I've been having some similar problems and I can't seem to figure out the link. It might be too much fat, or too many carbs?? I just don't know. I get excessive (and different than usual) gas and sometimes stomach pain when I eat peanut butter, dates, and now hummus, in addition to gluten, soy, and dairy. I don't know the connection between these foods. I'm sorry I can't really help you, as I'm trying to figure it out myself, but I just wanted to empathize with you! It's so frustrating......eliminating just gluten would be so easy.

    Personally, I take probiotics and a multi-vitamin. I'm not sure if I need anything else. I eat lots of fruits and veggies daily so I think I get enough fiber but who knows.


  13. I don't react to nuts, although I hugely react to peanut butter. Peanuts alone do not cause reactions but whenever I eat peanut butter, I have the same GI reactions as when I eat dates. Do you have any idea what in the peanut butter I could be reacting to? It must be the oil(s) in it. Peanut butter doesn't have soy, right?

    It could be the sugar content. I mainly eat very healthy and try to limit the sugars I eat. I do eat lots of fruits. My diet includes at least 4-5 servings of fruit everyday and I don't seem to have a problem with raw fruits. How would I know if Candida is the problem? I'm taking probiotics and eat non fat greek yogurt everyday (don't know if this matters, but I'm trying to produce more healthy bacteria). Thanks for the help!


  14. So after going gluten-free, I have obviously become very aware of what goes into my mouth. I react to soy and lactose too, so I try to avoid foods with those things as well. A few months ago, I used to eat a lot of Larabars without problem. Then all of a sudden, I began noticing that the bars were causing me lots of gas and stomach distress. So, I found a new gluten-free bar (Bora Bora) that was not mostly made of dates (which is what the type of larabar I was eating was made of). Just the other day, I decided to try a Think Fruit bar (which is gluten-free, dairy free, soy free). It's made mostly of dates, though. I decided to try it; I haven't eaten a larabar in awhile. Well, definite GI reactions!! Major gas, stomach pain, bloat. It's almost like I ate gluten or soy. Could it really just be the dates that I react to? Is this common? I know some foods occur in groups that people are intolerant to, are dates a part of any group like that? I know raisins usually cause gas for me but not as bad....I can drink wine. Any ideas or can anyone relate? I think I need to start keeping a food journal....


  15. My endoscopy showed mild blunting of my villi - yet 2 different doctors who viewed the biopsies said I don't have celiac. So, something besides gluten was causing the blunting...... I'm thinking it was soy because I haven't eaten dairy in awhile and whenever I eat soy, I get major GI symptoms. I think because of this, it caused me to react to gluten in the same way a celiac would. Now I just need to figure out if this gluten intolerance is permanent or just temporary......I'm too scared to try gluten since I've been gluten-free for almost a year.


  16. So it's been awhile, but I saw Dr. Fasano in late Feb and was able to send him my EGD slides in March so that he could review them. When I first saw him, he read over my records and said that he felt it was most likely Celiac but he couldn't officially diagnose without seeing the slides. He sounded pretty sure; I asked him if it wasn't celiac, then what would've caused my villi to be blunted. He basically said nothing else would cause it. (I have read that soy and casein intolerances can cause blunting even though he didn't mention this) Well, I just got a letter in the mail saying that the EGD was normal. His nurse wrote that because my symptoms have improved off gluten, that I could have non celiac gluten sensitivity.

    Before I was diagnosed, I was eating a lot of soy. Now, I don't eat any because I get some GI symptoms when I do. I'm starting to question if maybe it was the soy that blunted my villi? I'm lactose intolerant and have been avoiding dairy for awhile..or at least milk, cream, things high in lactose. I'm thinking about testing gluten out and seeing if I feel symptomatic. The thing that makes me hesitate is that I do have a DQ8 gene, so even though I don't have celiac, the potential is there. I don't know....now I rethinking this. I don't want to restrict gluten for the rest of my life if I don't have to. I've heard that intolerances can be outgrown sometimes, so maybe it is possible for gluten intolerances to be outgrown? Any advice?


  17. For me it's usually at least 2 days, sometimes up to 4 or 5 depending on how much I eat. Usually, I only get glutened from CC issues so it mostly only lasts a couple days. For me, the worst is the horrible gas and D. Sometimes the gas happens within a couple hours but sometimes it doesn't show up until the next day. Then every time I eat anything, my stomach rumbles and feels unsettled and I have to rush to the bathroom (usually at least 5-6 times by lunchtime). Also, I get depressed/irritable. Sometimes I bloat and get stomach pain. Sometimes I get really tired.

    Does anyone else find that their reactions tend to be slightly different each time? I don't mean reaction time, but actual symptoms that come?


  18. That's exactly what I had thought/hoped would happen - after going gluten-free, my hunger and thirst would go away or decrease at least....and they have a bit. Or I should say, at least my hunger did subside for awhile but just recently I never feel like I'm full. And I used to be able to go at least 4, 5, 6 hours without eating, but now it's like if I go 2 or 3, I start to get so hungry and weak/shaky. As for the thirst, it's better than before I was gluten-free, but it still seems like I'm filling my bottle of water a million times at work and don't stop drinking until I go to bed. When I wake up, I'm often thirsty right away.

    I am taking a multi vitamin because my iron levels were borderline anemic a few months ago when I had them checked. I believe all of my other vitamin levels were within normal ranges...but I had them checked about 4 months before my symptoms got so incredibly bad. I did not have them checked right before I went gluten-free. Not sure if the levels could've changed in 4 months.

    Do you think I need to be taking something else? Like to balance my electrolytes? How would I know if I have an imbalance? I did notice that the other day, I became really hungry/shaky, but I was on my way to the gym (I had seriously eaten 1.5 hours ago) so I stopped and bought a gatorade. My symptoms did go away. Not sure if that's the electrolytes or the sugar? I want to get this straightened out b/c I've been overeating b/c of this and I'm starting to not feel too great about that scale!


  19. Thanks for your responses! I forgot to add that I am between jobs and don't have insurance at the moment...hopefully by mid June I'll have insurance again. Also, I feel like a hypochondriac sometimes...my old PCP who thought I might have PCOS doesn't even believe that I should be eating gluten free. Even with all of my symptom improvements (including the mysterious return of my period after going gluten-free!) Hmph. Through the last few years, I've learned that you really just have to listen to your body though, b/c you are the expert of your body, not the doctors. So I guess I was just posting to see if what I am describing could possibly be something and not just "nothing" or insignificant.

    As for my diet, I've decreased my cereal consumption by a lot! Although, I have been eating more rice chex and gorilla munch lately. I usually eat plain greek yogurt and blackberries for breakfast, banana for snack, lunch is some sort of salad with protein (beans, eggs, tuna, etc) and fruit. After work is my worst eating time and I tend to eat little snacky type things instead of real dinner most nights. I usually eat most of my carbs during this time. I do try to eat protein though too.


  20. So I should start with the fact that I haven't been diagnosed (yet) with celiac. My biopsies from last year are being looked at by another, more knowledgeable GI doctor and he hasn't gotten back to me yet. From the endoscopy report, he said it's most likely celiac. Anyway, despite not having an official diagnosis, I went gluten-free last year and pretty much all of my symptoms have subsided.

    Here's where my question comes in. Before I was gluten-free, I lost my appetite. My stomach was in pain/gassy/bloated all of the time that I just didn't really eat that much, and plus I wasn't all that hungry so it wasn't a big deal. I didn't lose LOTS of weight, probably only 10-ish pounds over a period of 5-6 months. Currently I'm 140lbs, but I got down to about 132lbs and I'm 5'5''. I was never emaciated but my body has an athletic build so 132 was pretty skinny for my body. Right before going gluten-free, I started to become ravenously hungry and was ALWAYS thirsty. Thirsty to the point where going 30 minutes without drinking water was hard. I think this was probably due to the malnutrition and my body not absorbing anything (??)

    At first when I went gluten-free, my hunger leveled off and my thirst decreased (a little). Also, I had missed my period for about 5 months pre gluten-free and went to my PCP, who said that I may have PCOS and mentioned something about insulin resistance?? (I should say that before going gluten-free, I was in grad school and crazy busy so often had cereal for breakfast, snacks, and dinner. I ate a lot of fruit and veggies, but also went through boxes and boxes of cereal. It was seriously as if my body was addicted to cereal....which makes me think I possibly made my body become insulin resistant??) Since going gluten-free, my periods have returned and are mostly normal (just a little light) and my GYN never said anything about PCOS at my exam a few months ago, even though I mentioned my PCP said something about it.

    So anyway, over the past few months, I've noticed that I have been experiencing almost hypoglycemic symptoms when I don't eat. I am getting hungry more often and if I go a couple hours without eating, I sometimes get shaky, very hungry, weak feeling. I'm always thirsty and I go to the bathroom a lot, which I know are some diabetes symptoms. Isn't diabetes and hypoglycemia on opposite ends of the scale? I don't think I have diabetes, but the always being thirsty thing makes me nervous. Plus, I have a DQ8, which I was reading about the correlation with diabetes. Like I said before, I'm not overweight, I'm a pretty normal weight for my height and I'm 26 years old, so I'd think that I might be a little old to just be developing type 1? Also I'm not losing weight, which I know is a key symptoms of diabetes. Do you think I caused these symptoms because I was eating so many carbs? Now my diet is much more balanced and I do eat protein with most every meal.

    Any ideas/comments would be greatly appreciated! Thanks for your help!! And if you have any more questions, I'd be happy to answer them, as I know there are things I left out....


  21. I'm sorry you're going through this. I had a similar (kinda) experience with one of my GI docs. She thought I had Chrohn's, but 2 weeks later for my follow up, she was like, "well you don't have Crohn's. Do you have a boyfriend?" I was like, excuse me??? She totally just dismissed all of my stomach problems as stress/depression. I was sooo frustrated. It's taken me a LONG time to be able to be assertive with doctors. I'm getting more comfortable with myself but it definitely feels terrible when doctors dismiss everything as just stress or mental instability. I'm in the mental health field, so I know that there's a connection between physical and mental, but that doesn't mean that someone should assume something is mentally wrong with you just because that person can't find what is medically wrong with you. Long story short, I do have Celiac....but it took 3 different GI doctors to actually get a correct diagnosis. So, don't give up! It's a learning process and you'll become more assertive the more you have to keep seeing doctors.


  22. My most noticeable symptom that completely disappeared was my constant gas. It was becoming a HUGE problem and was keeping me from many social situations. Also, my stomach would immediately start making rumbling/gurgling noises after eating, as if it just wasn't being digested properly. The gas stopped within 2 days...it was that quick. It came back here and there because it took me awhile to become completely gluten free, but the first few weeks, I ate very plainly and it definitely made such a big difference. Also, the big D has pretty much gone away. There were days where I went to the bathroom 10 times. Now, I usually go 2 or 3 times, which I guess might still be a lot for some people, but in comparison to before it is okay (and now it is not D). I've heard that it takes longer for symptoms to subside in some people; I think it depends on the amount of damage to the intestines. I caught mine relatively early, only having mild damage/malabsorption/inflammation of my intenstines so my recovery was quick. Good luck to you!

    Oh and also, yes!!! I agree, I wanted to be diagnosed with Celiac! I was disappointed when I wasn't at first. Too many of my symptoms matched up, and I had finally thought I had my answer and I'd start to feel human again. My diagnosis was delayed a bit but came after I have been gluten free for awhile (I got a second opinion on my endoscopy biopsy- so even if your biopsy comes back "negative", there is a possibility whoever looked at it read it wrong). My advice -- when your testing is done, go gluten free. You have nothing to lose!


  23. hmm, I'm sorry you've been back and forth to so many tests with no answers! It's sooo frustrating! <_< One thing to be thankful for is your doctor(s)....they seem to be taking you seriously and really trying to find an answer - not just saying, "it's IBS" or "it's stress."

    I think so many people don't have a definite diagnosis when they decide to go gluten free. For me, it was harder I think. Not having that medically supported diagnosis makes it difficult to justify the strictness of the diet. But it sounds like you have a supportive husband, so that's half the battle! I'm still waiting for the review of my slides to come back. Either way, I'll stay gluten free. We all know our bodies so much better than any doctor. One GI doc I saw said there could be varying degrees of celiac. I don't really know how much I believe her; that's like saying, you are only a little pregnant. But maybe she meant that in the beginning of the disease, there's not enough damage to get a positive biopsy? Maybe the "minor" abnormalities we've both had on our endoscopies indicate "early" celiac (or whatever you want to call it). Who knows. This disease is still in its infancy regarding medical research. I wish you the best of luck though! Still keep us posted, if you find you have IBD or whatever. I'll keep you posted when I find out about my biopsy and what the expert in the field says! Maybe it could help you too....