What If You Just Can't Eat Anything?

[IChaseFrisbees]

First of all, has anybody else remember the day they first had intestinal problems? I went to a party, made some bad decisions and ever since the next day it's never been the same. Before that night I had perfect digestion, no food allergies, no bowel problems at all, I could eat a whole pizza, I could eat BBQ for lunch and dinner and I could eat an entire loaf of bread. Now I can't eat anything. Did anyone else have such a dramatic reversal?

And now, I really can't eat anything. Enterolab says no gluten, I go off gluten, stool test says yeast so I go off of sugar and all carbs. I'm down to meat, veggies, nuts (no peanuts) and eggs, and I'm almost worse than before after showing mild improvement with each removal.

My sister is in her first year of med school and called me out of class the other day asking if any doctors had talked to me about whipple's disease, and I told her there have been fewer than 1000 cases.

What could be wrong with me?

[lizard00]

I think that you do need to investigate something other than or in conjunction with celiac. You shouldn't be steadily removing foods with no improvement. And since you say you are getting worse, that's definitely a sign that something else could be going on.

Why do you discount Whipple's disease? Because there's been fewer than 1000 cases? Does that automatically mean that you can't have it because it's so rare? Perhaps it's not Whipple's disease, but something else bacterial. For example, Lyme can cause food intolerances.

Whatever the cause, you need to keep looking.

[Mother of Jibril]

I agree that you should keep looking!

Another thing you might want to consider is "mastocytosis." The most common form is when you have too many mast cells in your skin (causing constant hives), but you can also have too many mast cells in your bone marrow, lymph nodes, liver, spleen, and digestive system, causing lots of problems that are similar to celiac disease... malabsorption, abdominal pain, diarrhea, etc...

The official word is that mastocytosis is "rare," but there's a LOT of research being done right now. And... it seems like it's not really so rare after all. The Mastocytosis Society has good information: Open Original Shared Link

[IChaseFrisbees]

This has taken over my life, I'm dropping out of school because I can't concentrate on my classes and to try and make some headway on the medical front but none of the regular docs or the alternative ones know anything. I have to get a lot of testing done, but every time I do it all comes back negative....

At this point it seems like food allergies can't be the problem, because no matter what foods I eliminate I don't improve anymore.

Lyme, Whipple's, mastocytosis, crohn's, are there any other possibilities that could have just sprung up like that?

[Jaimepsalm63]

Check other things out. It could be a lot of things and not just Celiac.

Case in point, I had gastroparesis on top of Celiac, and I have a couple of other autoimmune problems. Don't rule anything out because you limit yourself without knowing why.

I know I can only do liquids now, but at least I know why I can only do liquids. It's not as frustrating if I can put a name to it. (Today is obviously a good day otherwise I wouldn't say that it's not as frustrating...)

If you don't know what is going on that is the part that can be maddening. Check it out, even if people say it's rare. Rare means squat if you have it.

[Treen Bean]

I know that my problems started after I contracted Cellulitis, and it started attacking my immune system. After that, I started having severe problems with gluten, dropped a ton of weight, etc.... But, other than developing a cashew allergy and becoming increasingly sensitive to cross contamination, I haven't developed any more problems. I hope you find the answers you are looking for.

[C.S. Blogsmith]

According to the science behind something called the Open Original Shared Link it is not necessary to cut out all carbs and sugars in order to defeat yeast. It is simply necessary to eliminate a certain type of sugar called disaccharides and polysaccharides. Over time you will be able to add sugars back into the diet. You might want to look into it. Though it is also a restrictive diet, it allows certain types of sugars and therefore it doesn't leave a person feeling hungry like Candida diets do. Aside from that, fruits supply the body with much needed vitamins and enzymes. Cutting them out (as the candida diet recommends for it's first stage) is not a brilliant idea.

[MightbeCeliac's]

ichasefreesbies I have some suggestions that might help you out. My sister is dealing with yeast overgrowth, she couldn't eat any starch and had gotten so thin was about diassappear. Getting rid of yeast is a long hard road and improvement takes times. After she'd been without starches for several monthsand painfully thin she'd only seen modest improvement. A little internet research suggested a supplement called Theelac. She ordered it about a month ago and is already feeling way better, last time I was her she was eating sweet potatos and rice etc... So def. reccommed this supplement.Some of the symptoms you're experiencing now might be due to the yeast die- off process.

Have you added any vitamin supplements?

[IChaseFrisbees]

I am on a vitamin regimen, but I haven't noticed any difference. I guess it's still good to get them in though. Through Enterolab I found out a have a little bit of yeast, but most of the doctors say it's a negligible amount. I went on a candida style diet for a few weeks and at first felt better, than slowly got much much worse.

At the moment I'm waiting on blood tests for Celiac, as my new G.I. thinks the stool test isn't the best way to test for it, and I'm having an endoscopy next monday. I have bad digestive symptoms all the time now, and gluten free only helped mildly, as did dairy free etc. I guess I'll just have to see what the latest test results say.

[Yoekie]

Hi there,

I'm sorry to hear you're not doing any better yet, despite your efforts.

You asked if anyone else remembers the day things changed. I do. Maybe you remember my story -I had a food poisoning at 14 and it went a steady downhill from there. That one scoop of ice cream got me so seriously messed up inside that it took me 5 years to even START to recover. And no doctor knew what was going on, so I did some research and selfdiagnosed ibs. I now know about leaky gut and food intolerances but still I think ibs is true for me. I probably was intolerant to many things since right after the food poisoning but it wasn't just that... I felt I could not digest anything at all - even things that I'm not intolerant to. I remember it could take me hours just to digest an apple, rice cakes, fuit juice,... It felt as if my gut was Totally irritated, no matter what I ate. It thought I was going mad, and maybe going to die. But I didn't. For no reason - I started to get better after 5 years, I think the "natural healing process" kicked in. I'm still not well -but at least, I'm recovering.

So of course you have to rule out all possible major disorders but if nothing shows up, I think you might just have to accept that your gut got seriously messed up and is irritated with everything that comes in and that it will take a while to heal - but it will.

To be sure, I would make myself go through a short time of restriction. Like only eat the one thing you're most sure of you can digest (for most of us that's rice). If you do not become symptomfree on your most 'safe' food, than certain foods propably aren't the (only) problem, but 'food' in general, or rather 'the digestive system' is. I would then start eating what you feel most comfortable with. Like for example for me that was tasteless food - as I had ever prominent naussea. I also cut out everything that had any fibres, fat or acidity in it (like veggies, fruit, beans, meat) because my stomach couldn't cope with that. My diet did become very blend and unbalanced but I managed to eat everyday and keep up at school.

Regarding your situation -maybe you've already lost a significant amount of weight? and you said you're dropping out of school - there are a few things to consider - like what foods are most likely for you to keep your weight up and what can ease your digestion:

• have you tried coconut milk and eastern spices like ginger, cardamom, fennel seeds to ease your stomach? Mint tea can do a great job also as well as essential oils
  
• I find organic processed foods to be less troublesome than 'normal' food
  
• this is going to sound mad, but if just eating gets hard, check into babyfood, find a cookbook for kids all ages and find appropriate dishes for you. Babies have a very sensitive gut so what is good for them, is good for you. Check out Lizzie Vann's Organic Baby & Toddler Cookbook, it's great!
  
• to power up your diet (you could start to feel faint and have trouble concentrating simply from malnutrition), think of powder drinks and medical nutrition drinks: Nutricia has some great products
  
• You might talk to your doctor to find a med to aid digestion/stimulate your appetite/keep naussea or diarrhea at bay.
  

No matter what the reason is, you have to make it through this difficult time!! Try to make yourself feel as comfortable as possible and try everything possible to keep your weight up.

Good luck with the endoscopy and please keep us posted on how you're doing!

Best wishes,

Yoekie

[Wonka]

I was similar to you, where I was done to about 5 food and was still sick. In my case, it turned out to be cross contamination. When my daughter was also diagnosed with Celiac Disease, I decided that our entire home needed to go gluten free to support her. Within a week I started to improve and have been steadily improving since then.

[HotPeaSoup]

And now, I really can't eat anything. Enterolab says no gluten, I go off gluten, stool test says yeast so I go off of sugar and all carbs. I'm down to meat, veggies, nuts (no peanuts) and eggs, and I'm almost worse than before after showing mild improvement with each removal.

I finally went to a nutritionist to really refocus my eating and make sure that I was getting enough calories. She was fantastic and put me on a regimen. I can't eat gluten, yeast, almonds, any milk, anything aged or fermented, blueberries, strawberries etc. Until being diagnosed I also never ate breakfast. She put me on Metagenics "ultra inflam" powder shakes to reduce my overall stomach and body inflammation and get enough protein and nutrients into my system. It has been a lifesaver. I get it from Open Original Shared Link

[IChaseFrisbees]

Hey all, I'm reviving my own post so that I don't make a new one.

Brief review of everything that's happened, I went to a party in May of 08, was dumb and immature and drank wayyy too much beer and did pot cupcakes late in the evening, woke up the next day with major D which abated later in the day. I continued to have soft and loose, frequent stools for the next few days, and one of them was white. Ever since then I've had loose stool, always soft, occasional D, gas, occasional cramping, incomplete evacuation, and always the feeling of having to go.

In october I had a colonoscopy which came back clean, a parasite and bacterial stool test (3 days) which came back with C-Bac bacteria (I thought it was C-diff, but after reviewing my results I was mistaken!) and a yeast score of 1 on a scale where 0 is neutral and 5 is wayyy too much. I took an antibiotic for the bacteria and saw no improvement. Then I got my enterolab test which showed gluten intolerance and went gluten free.

Gluten-free I improved marginally, less gas and gurgly-ness and fewer BM's, (down to maybe 3-4 a day.) After I didn't continue to improve, I experimented with the SCD, which put me down to 1 BM but didn't resolve all my issues (it was still soft, lots of residue, unpleasant all the way around.) Then I got drastically worse, pulled out of school and returned to a diet that was normal except gluten free, went back to 3-4 a day and unpleasant symptoms.

Had blood testing done for food allergies and Celiac, as well as IGA (though after 5 or so months gluten free the IGA test is obviously inaccurate) the gene test came back negative, but I'm trying to get a hard copy of the results so I can ask for more help interpreting.

I hen had an endoscopy, which came back normal, and finally today I tested positive for bacterial overgrowth of the small intestine via lactulose breath test and am on an anti-biotic.

So sorry to waste so much time on that, but I anted to just get it all down so that if you see this you can reference it to see what I've done. Has anyone else had this, does it actually cause symptoms and could my problems that seem to be unrelated to Celiac (which I still think I have, because gluten free feels good) be resolved by keeping this bacteria in check?

Thank you so much, I'm supposed to go back to college on monday but I'm afraid to, because if I don't feel better from this then I just can't handle classes/sports at the moment, the physical symptoms have come with a lot of emotional problems and stress as well, as I'm sure many of you have experienced.

Thank you for taking the time to read this and I'm truly grateful for any light that anyone can shine on this.