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Newly Diagnosed: I Can't Eat Anything


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#1 Chaff

 
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Posted 27 November 2012 - 01:00 AM

Hi! I just got diagnosed yesterday and have been off gluten for just over a week (biopsy was last Monday). And I can't eat anything!

My self-indulgent rant:

I eat avocado, lime, and corn chips -- brain fog, headache, stomach ache. I eat scrambled eggs with nothing added -- severe GI issues, plus also brain fog, headache, stomach ache. I eat bacon and potatoes -- slightly less severe GI issues and more of the same otherwise. Almond milk and gluten-free Chex -- brain fog, stomach ache, headache. I eat homemade beef broth and pure white rice -- more brain fog, headache, and stomach ache. I eat homemade beef broth with just a few roasted vegetables -- painful stomach ache and starving a half an hour later.

I'm cutting out corn, possibly white rice, and all the fats I can. Dairy and soy are out as a matter of course. But I react strongly to most fruits and vegetables -- I only began investigating celiac because of my reaction to a fructose elimination diet, where wheat is taken out because of its fructan content. I even react to the ones that most fructose intolerant people are fine with. I'd try SCD, GAPS, Paleo and the like, but I am already dangerously thin -- there's no way I'm going on a ketogenic diet. Everyone seems to already assume I'm a vegan anorexic by the way I look. And I can only eat very limited non-grain starches like sweet potatoes and squash, because they also cause problems.

The Crohn's folks get a stomach tube. Is this my future?

I know...I'm probably just healing. It'll take time. Celiacs tend to have leaky gut issues that take months to resolve. I'll be on probiotics soon (on mail order from the States -- I'm in Japan), and that will take care of a lot of things. I could order some digestive enzymes, too, but they'll take a while to arrive...Meanwhile, I have my homemade saurkraut that will be ready in about a month.

Sorry for the complainyness--I just started the B12, so it probably hasn't kicked in yet. But broth? What?!
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celiac, hypothyroid, hereditary hemochromatosis
 


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#2 SMDBill

 
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Posted 27 November 2012 - 03:35 AM

Did your GI mention anything about gastritis or other digestive issues that are also present? I am not a medical professional so this is all guessing, but I'm wondering if an over the counter drug like Prilosec OTC or similar would help ease discomfort when eating? Digestive enzymes as well if you knew which type you needed and in what quantity. For example, I'm lactose intolerant so a couple pieces of hard cheese requires 3 strong lactase enzymes where most people seem to need 1. My first thought was you either have severe food allergies along with celiac or some other condition undiagnosed because the foods you have chosen are safe for celiacs.

Priolosec or similar will cut down on stomac acid production while food is present and there are others that treat symptoms as they happen. Have you experimented with any to see if they help the symptoms after you eat or to prevent them before you eat?

Those probiotics will for a few days make you wonder if they're even worth the money, but a month or two of taking them daily and you will hopefully feel thankful to have made that purchase! Mine have made a huge difference.
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#3 KrazyKick

 
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Posted 27 November 2012 - 03:54 AM

Hello!

I am sorry you are suffering like you are. I was drawn to this post because I have a very limited diet and I know how hard it can be. Coupe of things I noticed right off the bat I'd like to share with you. One important thing is to know how long it will take to heal! Way longer than you think. Patience is key. You do also seem all over the place as far as reactions. I also think you might have food allergies or another issue. I have celiacs but I am also allergic to 7 other foods. You may benefit from keeping a very simple diet for a week and then try new things one at a time. Keep a food diary too. Your moving around too fast to see which hurts and what you can eat. BTW, the bacon could not be gluten free! Some are, most are not.

I would go see an allergist and find out if you have any food allergies. I wish you all the best and remember...many of us are still healing years later. It takes time.
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#4 shadowicewolf

 
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Posted 27 November 2012 - 05:23 AM

Just some food for thought, its only been a week. Sometimes it can take months (or even over a year) to feel normal again. I'm willing to bet that those symptoms are lingering from your gluten-y diet. However, another thought is you are getting Cross contaminated. toaster, wooden utensils, scratched pans, etc need to be replaced due to gluten getting in there and not being able to get it out.

At this point, i don't necessarily think any other foods are causing this.
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#5 GFinDC

 
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Posted 27 November 2012 - 01:25 PM

HI,

Welcome to the forum! Venting/ranting is allowed here, we all do it sometimes. :)

A week is a good start on the gluten-free diet. But the immune reaction can take a couple weeks or more to die down. And every time you get a little bit of cc ( cross-contamination) in your diet it starts right back up. So you do need to be very careful and avoid eating foods that you are not sure about. That means not eating in most restraunts and cooking your own food at home.

Reactions can continue for months or years after stopping gluetn. Additional food intolerances can crop up at any time. But I wouldn't worry about that yet. Just keep eating whole foods that you cook yourself with minimal ingredients. Avoid spice blends and watch out for things you drink and also vitamin pills and meds that might have gluten. An old toaster can harbor hidden gluten crumbs and make you sick. Same with scratches in plastic bowls etc. Or a colander which is very hard to clean completely with all those little holes in it.

I think it is more common among us to have low stomach acid myself. So I wouldn't try Prilosec or other acid reducers at this point. Probiotics are a good idea. And digetive enzymes may help. Also avoiding starchy foods and sugar can lower the gassiness. No dairy and no alcohol may help too.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#6 Madagascar

 
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Posted 27 November 2012 - 02:36 PM

i'm even newer at the gluten-free thing, but far too much experience with stomach issues for me, my mom and my children. i take digestive enzymes and they are worth their weight in gold to me. I saw in the Newbie Info 101 post at the top of this forum that Digestive Gold enzymes are gluten-free. just bought them this morning. but i've been using digestive enzymes for probably 15 years. might be helpful to you - at least worth a try. they digest proteins and fats (beef, eggs, oils). eggs bother me if i didn't take them with the digestive enzymes. i'm understanding that the need to take these likely means my pancreas isn't producing the digestive enzymes that it should, likely from celiac disease.

almonds are not an uncommon allergy - my daughter is highly allergic to them. citrus is a fairly common one (me & my mom). did the broth have yummy onions or garlic cooked in it? those aren't uncommon allergies either. unless your rice is contaminated, it's the #1 least allergenic food, so if you're reacting to it, it may just be your gut is still out of sorts. personally, i wouldn't take that out of my diet - but of course, everyone seems to be different. can you try the rice chex without the almond milk? just eat it dry? potatoes are complex and especially with the skin, hard to digest. my mom had ulcerative colitis and a ton of food allergies and she was able to eat avocado, so my assumption is that it is fairly low-allergenic.

i also take lactase enzymes every day. Schiff makes some that are gluten-free and you take them once a day. they work for me and i would say i'm med-high on the lactose intolerance scale.

the foods that are kindest to most people's guts are rice, bananas, turkey and apples(sauce). if i were you, i'd probably drop back to those for a few days and see if your gut calms down. you said you're reacting to fruit - does it make a difference if it's cooked? the only raw fruit my mom could eat was bananas and melons if they were really ripe. everything else had to be cooked or not eaten. i did that diet for 2 weeks when i was trying to figure out what foods i could eat. if you try something like that, give it a few days to settle (3 days maybe) and see if it's possible to add one new food back in every couple of days. if you have allergies or intolerances, that may reveal which foods. at least that's what i did. but again, i'm new to the gluten-free thing - just lots of experience with unhappy gut.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#7 bartfull

 
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Posted 27 November 2012 - 03:42 PM

Gluten withdrawal will cause a lot of these symptoms. I was in withdrawal for the first three weeks. Brain fog and tired all the time. But I also wanted to tell you that I had to go completely organic for a while too. My nutritionist said my system was so messed up it was reacting to the pesticides and artificial fertilizers in produce too. I doubted her, but I tried it and it worked. Grocery store sweet potato - sick as a dog. Organic sweet potato - no problem.

Organic is expensive, but it helped so much. After a few months I tried grocery store produce and was able to tolerate it. I still prefer organic, but in a pinch, I can go to the grocery store and buy what I need.
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 Chaff

 
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Posted 27 November 2012 - 03:44 PM

Thanks, everyone! Lots of good advice. Clearly this is a SIBO/leaky-gut/general gut sadness sort of issue first and foremost, and after that is over I can investigate the food intolerances/allergies (I suspect my fructose malabsorbtion is due to this, too, since I can't eat even things the official diagnosed people are OK with). I had a RAST test for allergens. Everything I'm eating is something I am supposedly not allergic to. Can't have fruits and vegetables, though, so bananas and apples are out. I really doubt I'm getting cc from homemade broth and premade, store-bought Japanese rice -- but who knows, right?

I'm on a US military base in Japan, so they send all the biopsies back to the States, so I have 3 more weeks to go until I see the GI. He's already promised me lots of probiotics. I might as well wait for those, since anything I order myself, including digestive enzymes, will take about that long, since shipping through the military system typically takes a month (except for a few random things).

ANYway, for fun, here is some goofy doctor business:

I got diagnosed with a phone call after the blood test. It went like this --

The doctor said: "Just go on a vegan diet. You told me you're vegan, right?" I said: "No, but I think I have fructose malabsorbtion." And she said, "Oh, you poor thing. Well got to go!"

Take care everyone!
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celiac, hypothyroid, hereditary hemochromatosis
 


#9 shadowicewolf

 
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Posted 27 November 2012 - 03:45 PM

bartfull, i'm on the opposite side of the fence on that one. I bought some organic apples once and they gave me the worst belly ache ever. Went back to the ones i buy at sams club and no issues. I think it might have been whatever they used to coat it or something.
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#10 bartfull

 
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Posted 28 November 2012 - 11:10 AM

Shadow, I didn't do well with organic apples either, but it was because of salicylates. The only apples I am allowed are golden delicious and I don't LIKE golden delicious. I like MacIntosh apples, but they are high sals. :(

But I think I am ready to try high sals foods again, just to see if I can tolerate them now that I have healed (mostly). It won't be apples though. It'll be BLUEBERRIES - one of my all time favorite foods!
  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 





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