Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Worried About Calories, Refractory Sprue, And Basically Everything
0

20 posts in this topic

hello all. You've heard from me before about my dietary woes, in that my symptoms have regressed to pre-Coeliac days even though I live in a completely gluten-free house, have essentially given up restaurants, and so on and so on. A few people have offered advice toward what diets I should try next. I have decided to do the failsafe diet because it is the most comprehensive, but due to my wholefood intolerances and my inability to obtain fresh meat or low-amine meat, as well as my inability to eat much at once from reflux, it's looking like a few weeks of near-starvation before I can start testing things again.

Here's the scoop. My main symptoms are 24/7 headaches of varying intensity, fatigue/low energy levels, and, worst of all, acid reflux after every meal--sometimes straight throughout the entire day from awakening to bedtime. It was this terrible reflux that almost turned me into an involuntary anorexic prior to my coeliac diagnosis and which led me back and back again to the GI doc until he, on a hunch, performed the biopsy during my endoscope and followed up with the blood tests that confirmed my coeliac (I had no inkling of the possibility before then). All of these symptoms have returned to pretty much the same levels they were pre-diagnosis, even though they got remarkably better in the months after I went gluten-free for a time. The only symptoms that have not recurred are the unshakable depression, insomnia, and vague feeling of emptiness/emotional confusion that characterised most of my adolescence and young adulthood and that I seemed to trace straight back to soya. I have had episodes of such since, but it never lasts till morning.

I'm intolerant to gluten and soya most definitely, and have experienced feelings akin to drunkenness after eating ice cream so I suspect casein as well. Someone has suggested fructose malabsorption as a possible contender for the reflux and I have decided that salicylates could be likely. A few people are adamant that I may be intolerant to all grains, so even though grains are allowed on the failsafe diet I will eliminate rice and millet (the only grains I was eating) for a full week or two before trying them again.

So I am turning this into a 5-food elimination diet and selecting only foods that are on the failsafe list. My five foods (all of which I was not eating regularly prior to the worsening of my symptoms):

- eggs

- red lentils

- Brussels sprouts

- white potatoes

- cashew nuts

With sunflower oil to fry the eggs in, although I will pat them dry before eating them since oil can cause reflux. I will learn how to properly boil eggs if I suspect the oil is a problem. Also I am including plain rooibos tea (naturally caffeine-free, low-sal, and low in tannins), and a hypo-allergenic multivitamin to combat malnutrition along with my hypo-allergenic iron and vitamin D supplements (which I take because my levels were on the very low side of normal), and 3-6 mg of melatonin at night for sleep.

I am also taking hypo-allergenic digestive enzymes with betaine HCl because I have noticed a difference in the reflux when I take them vs. when I don't. Even they do not eliminate it, however. I have also tried apple cider vinegar and baking soda (mixed, separately, before meals, after meals, on an empty stomach, etc. etc.) and while the ACV does seem to help, again, it does not actually stop the reflux from happening. It just changes an irritated throat to heartburn or makes the heartburn more manageable or whatever.

N.B. -- I cannot afford to go to a doctor until next October, when my health insurance will change from catastrophic-only to a comprehensive co-pay plan.

If anyone has any advice or suggestions let me know now.

p.s. -- anyone who has done elimination diets before: if you go on a day or weekend trip somewhere and cannot bring loads of your own food or cook, what do you do for eats? Go into grocery stores and buy packets of (in my case) cashews and subsist on that? Try to find boiled eggs or plain baked potatoes somewhere? ehhhhh... starve? "test" a food that it is unlikely you will react to? idkidk

0

Share this post


Link to post
Share on other sites


Ads by Google:

If I were you, I would consider super sensitivity to gluten cc as a possibility. You can read more about it in that section.

0

Share this post


Link to post
Share on other sites

I can't comment to the food issues as I am newly diagnosed and learning. Just curious as to whether or not you are taking an acid reducer.My reflux would be out of control without omeprazole which I take daily- every single day for life without fail. Uncontrolled reflux will damage your esophagus and leave you more susceptible to barrett's esophagus- a pre-cancerous condition.

0

Share this post


Link to post
Share on other sites

I was on nexium for a very long time pre-diagnosis and it did not help. I had maybe less "heartburn" but more symptoms in the throat and mouth. Then they gave me carafate to coat my throat and it kept me from feeling like I was choking whenever I ate solid food but didn't help in any other way. I felt a lot better after I got off the nexium--originally. that was when I went gluten-free.

proton-pump inhibitors mask the problem rather than fixing it. no one suffers from too much acid, the problem is the flap on the stomach failing to close and stay closed. it is better to control reflux with diet and lifestyle changes, imho. I just can't figure out what they are for me... ugh.

but, to be clear, I did try nexium for months originally and it solved nothing, so I doubt things are magically different this time.

0

Share this post


Link to post
Share on other sites

It does sound like you are a super sensitive. I have a friend who has many, many allergies similar to you and her diet had to undergo a huge overhaul. I am not sure where you are, but your symptoms sound suspiciously close to my Lyme Disease symptoms before I was diagnosed. It can wreak havoc on every single system in your body including neurological symptoms and digestive issues. You will need to find an MD that does the Western Blot test if you choose to pursue it. The other tests are touch and go at best.

AS far as getting rid of stuff in your diet, some alternatives I've found that are good for super sensitives are potato milk, almond flour (very base on the pH scale) and anything coconut. My mother swears by pure aloe juice for her stomach when it's being disagreeable.

0

Share this post


Link to post
Share on other sites




what do you guys mean by "super sensitive"? Does this mean I am super sensitive to gluten and/or casein CC only, and my rice etc. may be contaminated? Or does this mean I am sensitive to absolutely everything...?

is there a way to find this out without paying for doctors or blood tests? I can't afford these things until next year when I go back to the states and my insurance kicks back in. And I'm not so bad off now that I'm going to leave Ireland early and waste all this money on... nothing.

ANY advice is appreciated, and I mean it. I'm going to give an extremely simple 5-food diet a chance first, for at least two full weeks without cheating. Then we'll see...

0

Share this post


Link to post
Share on other sites

Super sensitive means that you react to small amounts of gluten cc and need to avoid processed foods and probably grains too due to shared harvesting and processing equipment. You can also be super sensitive to casein etc.

0

Share this post


Link to post
Share on other sites

I already don't eat gluten-free processed foods, if that's what you mean, except for rice milk and ground rice/millet porridge. I'm going wholefoods for the elimination diet thing anyway so that should rule things out?

lentils should be ok, right? Dried beans? And I'll stay off the rice for the meantime.

0

Share this post


Link to post
Share on other sites

I also suggest super sensitive celiac. Your millet cereal may have some cc, even. Any grains may be processed on equipment not cleaned well enough for your sensitivity. I've never found rice to be an issue, although some other people do. Maybe give up the millet for a bit?

I suggest not over complicating matters unless absolutely necessary-- since you know gluten is a problem (with casein and soya), and gluten is so sticky and insidious, it's really likely your symptoms that feel like gluten are in fact caused by gluten, just at a level of sensitivity you didn't expect. (totally relate to that!)

0

Share this post


Link to post
Share on other sites

Ps: I haven't had any trouble with beans or lentils, personally.

0

Share this post


Link to post
Share on other sites

I stopped eating millet because it is very often cross-contaminated and practicaly impossible to sort. As for the other dry food, buckwheat and lentils are the most contaminated (at least here). Canadian lentils from 2009 harvest were the worst so far - up to 40 wheat grains per kilo. :o Usually it is around 1-5 in buckwheat and a little more in lentils. Rice was mostly ok, a random grain here or there, but less then one per kilo. If you are super-sensitive, sorting all grains and legumes (and washing them before cooking) is a must.

Funny thing about buckwheat is that I buy one brand labelled gluten free, one without any labeling and one with "may contain traces of gluten" warning and there is absolutely no difference in the level of contamination. 20mg/kg is about 8-10 grains in a kilo, so legally they are all labelled correctly...

0

Share this post


Link to post
Share on other sites

Also, do you use any packaged herbs and spices? Sometimes these are contaminated even when they claim gluten-free - in my case it was oregano and carraway seed, gluten-free mixed herbs and of course paprika.

0

Share this post


Link to post
Share on other sites

I sort my food. I have found wheat grains in millet and beans so they are not safe for a super sensitive. Many beans are processed together with wheat. I haven't been able to find a safe bean source which I can tolerate.

0

Share this post


Link to post
Share on other sites

here is an update to my situation.

My mother recently sent me a care package as I'm overseas in Ireland atm, which contained lovely gluten-free goodies such as rice-and-onion crackers, rice-and-sesame crackers, root vegetable chips, and larabars. Since she sent it, I'm eating it. I've already eating a whole bag of the root vegetable chips, half the rice-and-onion crackers with my lentils/brussels sprouts soups I've been making, and I broke down this morning to drink normal tea and bought more rice milk because if I'm gonna eat the rice crackers anyway then I'll just wait to start the elimination diet for another week or two.

basically my diet has not been consistent in any way, shape, or form, for the past month or so.

my reflux has miraculously and inexplicably improved.

the only foods I said i'd give up that i haven't had in a while are millet and sesame. (I'm holding off on the sesame crackers mama sent for the moment. i'll test them with the tahini again sometime to see if the insomnia and weirdness comes back.)

but I have come about 2-and-a-half weeks away from a possible glutening and I have stopped buying a chocolate treat that says "MAY CONTAIN MILK INGREDIENTS" on it since I never *proved* casein to myself (but it seems glaringly obvious to me atm).

the reflux is by no means gone, but it is so much more manageable for the past two days. it has been replaced by mild D tho... great! but that is treatable with baby wipes and patience and is relatively painless so I prefer that to reflux.

i will continue to monitor my condition and see if the reflux persists or continues to improve.

what you are saying seems likely. i am probably growing more sensitive. how sensitive yet i do not know.

0

Share this post


Link to post
Share on other sites

This:

"except for rice milk and ground rice/millet porridge"

sounds like it could be a problem. Maybe make your own milk from cashews? (Blend with water, strain). Rice milk has a lot of ingredients.

I know there are a lot of possibilities, so an elimination diet sounds smart. I personally had to go grain-free. That's just what my body is asking for.

One of my friends just started an elimination diet under the supervision of a naturopath. She is eating lamb and veggies. That's pretty much it. Then will add in one food at a time. Lamb is supposed to be a fairly hypo-allergenic meat.

When I was having a lot of trouble with who-knows-what I found I could only tolerate cooked veggies. I know that's not an ideal thing to do for life, but it was the only way my body was breaking down the nutrients.

I know it's hard, but try to get rid of the rest of the processed food. That would include the chocolate, cereals, rice milk, etc. Don't forget to drink plenty of water if you have D! Good luck!

0

Share this post


Link to post
Share on other sites

Glad you are improving. If you aren't already, keep a food journal. Write down what you eat and how you feel. It makes it easier to figure things out. Keep track of brand names too.

0

Share this post


Link to post
Share on other sites

noted.

reflux back today, bad as ever. but the past two or three days were much improved. I introduced too much back into the diet at once, probably, and will simplify diet again pronto.

with reflux, shouldn't it be that the last thing you ate is causing it? not something eaten the day before or before even that? my instinct is to say, "oh well I ate that today so i should avoid that," but there is no rhyme or reason to the reflux because I can have it on an empty stomach, after drinking water, after eating carbs, after eating no carbs, after eating no fat or oil, after eating oil, and on and on. just 24/7 reflux that has no beginning or ending.

the antacids i take to combat it actually work in short term but i think they may make it worse in long term. once they're gone I won't buy more unless i'm absolutely dying...

0

Share this post


Link to post
Share on other sites

I get reflux symptoms a few hours later in some cases (certain foods). It's usually soon after but sometimes my dinner will wake me in the night. :/

0

Share this post


Link to post
Share on other sites

My son gets reflux two days after eating the problem item. It takes me a day to notice most symptoms. I think that it is different for everyone and for each symptom, and varies depending on how much cc you get. Isn't it fun how hard this is to figure out!

0

Share this post


Link to post
Share on other sites

ugh, I know.

reflux is not gone, but it is a lot better. D is gone. new symptom: crazy bloating and burping gas. whyyyyy

anyway, I went to buy a brand-new bag of red lentils since I've been enjoying them, but I looked in the bag and saw obvious CC with split peas and green lentils, and a grain I did not recognise that might be a strain of wheat. So, it seems obvious to me that even though tesco-brand dried beans etc. do not list wheat CC in the allergen box the way they list nut CC, they're prolly contaminated. I am going to give up all tesco-brand grains (I was eating their long grain rice), beans, legumes, etc. I will keep eating tesco brand veg and potatoes though.

I am trying a new thing... white potatoes, peeled & mashed with sea salt, meats of various types, canned green beans, frozen brussels sprouts, eggs. am I missing any nutrients? this is just for a week or so and I have a multi. I am trying to avoid fructose, salicylates, and possible gluten CC. just until the reflux is gone or mild enough that I can "test" foods.

in the meantime I will research and see if there are any TESTED gluten-free brands of rice or lentils available in Dublin, Ireland.

also, I want to "test" goat casein eventually because I heard that one person who couldn't have cow casein could have other kinds. Is this silly and a waste of time or is it common to be ok with goat casein and not cow casein?

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,146
    • Total Posts
      919,572
  • Topics

  • Posts

    • Hi, I am 20yrs old and have had this weird stomach pains on and off for 2 years. They started by just having pains on my left side when I sucked in or pressed on my tummy. In the last 3 months they have gotten really bad, with a lot of bloating and used to occur almost every time just before bed I would get bloated, and feel constipated like I just needed a hole in my stomach to release the pressure. I have had tests for lactose and gluten, and they both came back negative. I was not having any gluten at the time of the test which I have read can affect the results. I had little help from my doctor so I went gluten free which was working really well and I would only have pain once every two weeks. The last three nights were awful, I was in so much pain I struggled to walk, and again they would go away in the morning. I looked like I was pregnant and relief was only through passing wind (sorry for the detail!). I was wondering if anyone has had similar experience, or could point me in a direction to help me. The weird thing is that I did have gluten one day and that didn't seem to affect me at all. Then I will have something like vegemite (I'm from Australia) and this is the only thing that I can think off that would set me off (it contains wheat). So I don't really know what do to or where to go, these stomach pains have been heightened since I had a horrible gastro for a week, and went to hospital. Could it be possible that my gut lining has been damaged? I have become really stuck on what I should do next, as tonight my stomach is fine, I actually feel hungry (previously I have felt super full as a result of being bloated), so I have no idea what triggered that horrible episodes before I went to bed for the last few nights. Any thoughts or suggestions would be amazing, thank heaps
    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,178
    • Most Online
      1,763

    Newest Member
    Sarah.e.may9602
    Joined