Full Blown Crisis Mode

[jasonD2]

Hello All-

I never thought I'd be making a post like this again, but unfortunately my situation has taken a turn for the worse and I'm about 2 steps shy of checking myself into the hospital. I cannot eat ANYTHING without feeling sick. I have had this duodenitis for 4 months and its getting worse...I am barely eating now and the pounds keep dropping. My biggest concern is that I'm not getting enough nutrients cause I just keep eating the same food for breakfast lunch and dinner...chicken, brown rice, yellow squash, olives...over and over and over again. Right now anything else gives me a horrible fullness in my upper abdomen with burping and indigestion. I have convinced myself that I am now severely fructose intolerant since all foods that contain fructose or fructans seem to make it worse (fruits, corn, agave, zucchini, asparagus, artichokes...even my probiotic supplements contain inulin/chicory). I really dont know what to do. I tried to conceal from my mother cause i dont wanna upset her but she saw right through it and is in turmoil...she told me "you are going to die if you dont eat"

Anyway, I am beyond helpless and just dont know what to do anymore. I had a bunch of tests this past week (lyme disease, parasites, organic acid & nutrient deficiency) and it will be 2-3 weeks before I have the results. I must admit that when I was taking Alinia to treat my parasites I was feeling a ton better, so that leads me to believe that I still have a parasite or something inside my system. Last night I forced myself to get out with my friends and they ate dinner and were raving about the food while I just sat there practically in tears. I can't get my work done and can't travel until I get well again - i might even get fired if this keeps up.

Anyway, I am so sorry to be freaking out again. I felt like I was on the mend for a while but now I'm back to where I started and its getting worse. I'd really appreciate any input. I am going to try to get some IV nutrients this week just so I dont die from lack of nutrition

Kind Regards,

Jason

[runningcrazy]

I know this wont fix your problems, but have you tried going about eating with a different attitude? Rather than thinking, whats the point, i just need to eat so i dont die, im going to hurt anyway. Just get something you think will be easiest on your stomach, and just think i will be okay. I am just nourishing myself. Something along those lines. I mean if you always think you'll be in pain, you will be. Try looking at it from a different perspective.

Can you try adding in some sweet potatoes maybe, to switch things up? I know sweet potatoes are generally easy to digest. What about teas like green tea? Could you try some simple vegetable soups with no tomato of any kind? Avocados would be a good thing to eat for good fats and calories, and they are on the list of easy to digest foods(hopefully easiER for you)

Im sorry this wasnt much help. Just know that you will find a way out, it may take time and a new attitude towards it. Try not to make it all you think about.

[jasonD2]

Ate some sweet potatoes yesterday and I didnt feel well after, Avocados have been a problem for me and green tea has caffeine..a big no no.

[YoloGx]

I agree, adding some cooked vegetables to your diet wouldn't be amiss plus some positive visualization. Things like celery and parsley, and maybe broccoli and bok choy?

Meanwhile I wonder if you are taking any digestive enzymes like bromelain/papain or simple plant digestive enzymes? Enterically coated acidophilus could help a lot too. Make sur eof course they are gluten free...

I have found that taking marshmallow root and/or slippery elm goes a long ways towards soothing and healing the lining of the gut. These two herbs are particularly effective if you are suffering due to intestinal irritation for whatever reason. I looked it up and wonder if its possible you have taken too many NSAIDS??

In addition to the marshmallow root etc,h olive leaf extract could be a godsend for you if you have some kind of low grade infection that antibiotics can't easily treat--like viral, fungal, microbial or h. pylori. If you get worse the first two or three days with the olive leaf its actually a good sign that its working. Afterwards you will feel a lot better. Just dial back on dosage and then gradually work your way up. If you do have parasites, the olive leaf will be a good first step against them. If instead you have a fungal infection, the olive leaf is good against that too. I hear its even helpful against malaria. Just amek sure your supplements of any kind don't have gluten--including alcohol since most alcohol has gluten in it.

Licorice root can also help against h. pylori. You can take the deglycerized kind if you have high blood pressure, otherwise the regular licorice root powder can be a big help. You could mix it in with powdered marshmallow root and water and drink.

As far as thinking positive, I agree its a very powerful thing to do--though its also equally powerful to be observant. The main thing here though is not to let yourself go into fear. It helps to remember you can lick this thing. Deep breathing might help plus some kind of yoga and/or meditation--or even long walks. It is after all a very good sign that you can eat chicken and rice and squash and olives. It may be that in the final analysis that you have some more food allergies that popped up that need to be discovered and dealt with. Its also possible you could do well on a cave man or paleo diet -- or else benefit from trying out a modified specific carbohydrate diet. I personally love the 24 hour home made yogurt.

I find it to be of benefit to go off all grains from time to time. Many of us cannot eat sugar or ground up flours or things from the potato family (potatoes, tomatoes, green peppers). It is very true one has to be careful about the condiments one uses since they often are hidden sources of gluten. Quite a few here cannot tolerate soy or cheese or corn or even minute amounts of lactose. Etc. Simple but tasty meals can still be had. Its important to not eat what others prepare usually since you might otherwise get cross contaminated from gluten by the most mundane and obscure means--like wooden spoons or cutting boards or iron pots or pans previously used for gluten--or even hands contaminated from glutenous aprons.

Good luck!

[echomama88]

Jason,

Bless your heart! It must feel as though you are walking in a minefield, not knowing which step will set off an explosion. I'm still fairly new to the world of celiac/gluten intolerance, and I know to expect those moments as my body heals. But it must be all the more frustrating because you've been dealing with it for some time.

To me, the good news is in this quote from your post: "My biggest concern is that I'm not getting enough nutrients cause I just keep eating the same food for breakfast lunch and dinner...chicken, brown rice, yellow squash, olives...over and over and over again. Right now anything else gives me a horrible fullness in my upper abdomen with burping and indigestion." There is at least something you can eat that doesn't cause the symptoms! That certainly does not diminish your concers. If you are losing weight at a rate that concerns you, don't hesitate to go to the doctor.

I have no idea if this is an issue for you, but I thought I'd mention it just in case it helps. I recently learned that I have Vitamin D deficiency. There is a link between Vitamin D deficiency and all manner of autoimmune diseases. Have your levels been checked recently? If not, it's something to consider...

Having said that, I know you don't need advice as much as you need support; you have that here! Hang in there, Jason. And please keep us all posted on your condition. I hope you start feeling better right away, that your symptoms will resolve, and that the frustration and helplessness you're struggling with will ease.

All the best,

Dawn

[DownWithGluten]

Is it possible you have an ulcer or gastritis? Unrelated to my gluten intolerance, sometime last year I was feeling AWFUL, like I didn't want to eat anything besides gluten-free bread. I had horrendous heartburn which soon just turned into this burning kind of pain right beneath my esophagus, right above my stomach. It would gurgle and burn if I didn't eat anything. So I'd eat something light, and then it'd gurgle and burn as it was digesting. It was pretty wretched. I even went to an urgent care clinic about it.

Eventually they gave me Nexium and Zantac, etc. They never checked for an ulcer, but they said Nexium is what they give ulcer patients anyway. It went away after a while, althought still crops up here and there.

I'm convinced that mine resulted from extra Motrin/Ibuprofen I was taking for period cramps. 4-5 years ago, a doctor told me to do that. Eventually it was just too much on my system. I noticed terrible heartburn around the time I'd take the Motrin, and eventually it just never went away and then developed into more acute pain in the same sort of area you mentioned.

Just a thought.

Edit: Okay duh you mentioned duodenitis which is somewhat like the start of an ulcer. When I was having my issue with this, I looked up things that caused extra acidity (tomatoes, chocolate...there was a whole list. You can look up 'what not to eat with an ulcer' kind of thing...here's just one example: Open Original Shared Link ) Perhaps eliminating those things would help. Did they give you Nexium or Aciphex for your duodenitis? Try Zantac as well, and Tums (only the peppermint flavor is gluten free, though. do not take the 'fruit' flavored ones) as a quick fix when you feel that burning pain. And try avoiding any anti-inflammatory drugs (NSAIDs) which is what caused it for me. Juding from your screenname, I'm guessing you're a guy, so you don't have the whole motrin-for-cramps thing going on...but you still might be taking motrin/advil for other things. I would eliminate that.

[jasonD2]

Thank You Very Much!

I am drinking Marshmallow Root tea as I type this I was taking digestive enzymes for a while and they really helped but had to stop cause they were irritating the gastritis (I was on Biogest which contains pancreatin, Betaine HCL and ox bile). Last week my GI doc gave me some Ultrase pancreatic enzymes and I had to discontinue cause they were making my stomach worse.

I haven't taken any NSAIDS in 10 years and stay away from drugs. Ive been on probiotics, but just found out they all contain either inulin or FOS, which might be causing a problem so I'm backing off.

I will look into olive leaf if in fact I do still have the parasites. As for the alcohol, I'm backing off on it and its my understanding that most alcohol does NOT have gluten...all proteins are removed in the process. I only drink wine anyway.

The Specific Carb Diet is just not an option now...I am already way underweight and if i cut out carbs im gonna be anorexic..cant do yogurt either (no dairy) only grains im eating are rice

Thanks for all the input!

[ravenwoodglass]

As for the alcohol, I'm backing off on it and its my understanding that most alcohol does NOT have gluten...all proteins are removed in the process. I only drink wine anyway.

Gluten or no gluten the last thing you should be drinking if you have stomach pain is alcohol of any kind. It irritates the stomach lining. If you can do without it for at least a few weeks it will likely help.

One note about the marshmallow, if you do take supplements or any type of meds make sure that you have some time between taking them and the marshmallow. Marshmallow has a form of muciledge (sp?) that can prevent absorbtion of them. The same properties that make it coat the intestine and soothe can effect absorption.

[YoloGx]

I can't handle HCL or ox bile either. Ironically I produce plenty of stomach acid, its just the intestines that need extra help with mild plant based enzymes. If they are bothering you however then yes don't take them.

Am glad to hear you are using the marshmallow root. I have found it to be essential at times. Its good for the kidneys by the way, as well as the digestive tract. The previous poster is right, marshmallow can gum things up as well as reduce the inflammation. But then maybe more of that is needed at times if you are experiencing leaky gut syndrome. Nevertheless its probably better to take your other supplements an hour or so separate from it if that seems convenient enough for you...

If you are getting an ulcer, the licorice root should also help. As said previously, use DGL if you have high blood pressure, otherwise plain licorice root is just fine though discontinue after 10 days since it will build up in your system. Take a week off and continue again as needed. It apparently is specific against h. pylori.

Another trick I read about is to use carob powder for similar purposes. I eventually react to it if I have it daily, but have found it good in a pinch. It also stops diarrhea, so it could constipate one if you aren't careful. It can be delicious as a hot drink sweetened with stevia.

Was glad to see that smile!

Bea

[jasonD2]

Many thanks again! I just had an endoscopy in Dec and no ulcers - doc only noticed duodenitis and even biopsied the area and it was ok. I just pray that if i do have a fructose problem that its temporary and will go away. Seriously, I cant restrict my diet any more...gluten, dairy, eggs, & soy are bad enough - fruit was the only thing left that I can enjoy and if thats taken from me too I just dont know how I will function...and its not just fruit...fructose is in some vegetables too as well as a lot of other things. Seriously, I will never be able to gain weight and will have to be on IV nutrients the rest of my life. My social life already sucks and if im even more limited I may as well just climb into a hole.

[mushroom]

Many thanks again! I just had an endoscopy in Dec and no ulcers - doc only noticed duodenitis and even biopsied the area and it was ok. I just pray that if i do have a fructose problem that its temporary and will go away. Seriously, I cant restrict my diet any more...gluten, dairy, eggs, & soy are bad enough - fruit was the only thing left that I can enjoy and if thats taken from me too I just dont know how I will function...and its not just fruit...fructose is in some vegetables too as well as a lot of other things. Seriously, I will never be able to gain weight and will have to be on IV nutrients the rest of my life. My social life already sucks and if im even more limited I may as well just climb into a hole.

What is happening to you, Jason, is not forever or for the rest of your life, so stay out of that hole You are having to jump over a hurdle on life's path, and once you get over it you will be fine. Most of these problems are only temporary until you heal, although some intolerances like soy may remain. Only time and healing, and some patience, will tell. Yes, it is a bummer of a hurdle, but stay sunny and you will get there.

[jasonD2]

I appreciate it, but honestly how am I supposed to have a normal life? EVERYTHING revolves around food...everything. and what if this all is permanent?

I can't date because no one will tolerate all my health problems...trust me any normal woman out there will think its odd when a seemingly healthy 35 year old male is so obsessive and strict about food. I know I wouldnt wanna put up with me

I can scratch holidays and dinner parties off my list - what do i do just bring my own food everywhere I go? brown rice and chicken...."hey look everyone, its the brown rice and chicken guy"

I am supposed to entertain customers for my job and havent taken anyone out in a year. Might be ok for my current job, but what about future jobs? Do i quit sales and go back to a boring office job?

This impacts every single thing I do

[YoloGx]

Many thanks again! I just had an endoscopy in Dec and no ulcers - doc only noticed duodenitis and even biopsied the area and it was ok. I just pray that if i do have a fructose problem that its temporary and will go away. Seriously, I cant restrict my diet any more...gluten, dairy, eggs, & soy are bad enough - fruit was the only thing left that I can enjoy and if thats taken from me too I just dont know how I will function...and its not just fruit...fructose is in some vegetables too as well as a lot of other things. Seriously, I will never be able to gain weight and will have to be on IV nutrients the rest of my life. My social life already sucks and if im even more limited I may as well just climb into a hole.

Ah, it seems we have some similarities here. I am glad to hear you don"t have an ulcer.

Similarly, I don't eat fruit either except for lemons--I use water and stevia and make lemon aide.

Eating with others is not foreclosed, you just bring your own or eat first. I also bring my own tea in a cool stianless steel thermos and/or water actually given how sensitive I am and all the ginger things about people offering tea with their gluteny hands etc.

I socialize quite a lot around other things, like poetry and art. It could be anything. Honestly it just requires new habits and a bit of imagination. If I really want to eat with folks and share the same meal, I make it. One can also join or start a celiac support group.

For me I think the fruit problem is due to candida overgrowth which I envision getting over some day, even though it is taking forever. Thank heavens for stevia I say!!

This candida overgrowth makes it so eating anything that converts to sugar quickly dicey. It seems to persist for me no doubt in part due to all the antibiotics I have had as well as the length of time I actually have had celiac. I have now started to make my own dairy free pancakes now and then but can't have them too frequently or the old candida problem resurfaces...so for me its not just the fruit.

By the way, by going off all grains for 10 months I now am not as restricted. I can have an egg once or twice a week. The same with organic cheddar cheese, which I could not tolerate at all in the past. Similarly I now can also have my own home made yogurt I ferment for 24 to 26 hours (it gets rid of all the lactose).

I also take nattokinase with plant enzymes once a day on an empty stomach to help counteract all the intestinal scar tissue. I have thick blood anyway, so it works out for me...since its not only a fibronylitic agent but also thins the blood. It helps against my other accident derived scar tissue too, which is actually why I started taking it.

We can and do adapt. Its just food after all... I tell my self this and honestly it does really help. It helps against all the pity patter. I see how much healthier and in effect "younger" I am than many others my age and actually thank the heavens.

As far as dating goes, if a woman can't see past the dietary restrictions, then you don't want her, believe me. So many people have worse problems. If someone truly likes you and wants to be with you, they will be considerate, especially if you are also considerate of them too. Gluten intolerance and food sensitivities are becoming more well known and it is becoming more and more accepted as time goes on. The best advice I can give you as far as dating goes it to follow some hobby or other pursuit that you are truly interested in which also involves other people. That way you can make quality friends and likely will meet women who will want to know you better. It will also help you stop obsessing on your restrictions, and instead focus on something more positive, like helping people or expressing yourself or whatever.

Bea

[emilyanne]

i feel the same way sometimes. like i'm destined to live in a bubble. or start up a celiac compound on some remote island somewhere. when i'm feeling isolated, i have people over. i cook. i give specific (brand name etc) things people can bring over if they HAVE to contribute. Bright sides aren't always fun to look for, especially when life has you staring down a dark tunnel sifting for answers, but they're there.

IV treatments are important. Have you tried acupuncture? it has been a wonderful additive in my life for dealing with loss and anger surrounding this disease. not to mention the brain fog and lethargy that accompanies bouts of contamination.

you can get through this.

[mushroom]

This impacts every single thing I do

Granted BUT, what I am trying to say is that you have to look beyond NOW! It will not always be like this. Suck it up for a while, be very strict and careful with what you put in your mouth NOW! and you will get beyond this and able to resume your life. Think of it as a broken leg or broken back. Just because you can't see what is broken doesn't change the nature of having to be patient and wait for the healing. Certainly with a broken back you can't continue living a normal lifestyle, and a broken leg is going to slow you down a bit for a while. You have to give yourself the opportunity to heal and not fret about what you can't do NOW.

[sandsurfgirl]

Jason I am so sorry that you are having such a bad time. I will continue to pray for you that you get the answers you seek and the healing you need.

You are getting so much conflicting advice from us on here and your poor head is just swimming. But know that we are all trying to help and support you in the way that we know how.

This will get better. It's not forever. I know it seems like it now, but it will improve.

Don't worry about socializing. People are hyper aware of allergies nowadays, so just say you have food allergies. Make something up if you have to. Nobody needs to know your whole medical story.

Have you sought out counseling or therapy for this? You are dealing with so much and it might help to talk to a therapist who can help you sort through the emotions and the grief and loss.

It sounds like you have a wonderful mother who really loves and cares about you. We are here for you to vent and talk anytime. I can't wait for the day when you post about how you are feeling better!!! It will come. Don't lose hope.

[jasonD2]

Thanks so much- trying to stay optimistic

[ciavyn]

I'm with Yolo - try to focus your socializing around the arts (it's what I do, because of the food issues!). The more mysterious you are, the more intriguing...many a girl will attribute your food concerns to your sensitive artistic nature.

I'm seriously not kidding. Don't lose heart. If my husband can put up with all my issues, you will find the right woman who can tolerate yours...perhaps she'll even join you on the journey of healthier eating. Dating is about the person, who they are and what they are made of. Not what is on their plate. Able-bodied people fall in love with quadriplegics. The sighted fall in love with the blind. Trust me -- yours is not that severe.

Hang in there, and keep us posted on what the tests turn up. I've been watching your posts, and your frustration breaks my heart. I'm hoping you find the right answers very soon.

[ravenwoodglass]

I can't date because no one will tolerate all my health problems...trust me any normal woman out there will think its odd when a seemingly healthy 35 year old male is so obsessive and strict about food. I know I wouldnt wanna put up with me

Jason have you ever thought of looking into a celiac specific singles group? I want to get back out there myself but have the same fears because of this disease. I did a search a short while back and found a couple groups that are just for us. Even if you don't find the 'love of your life' you may find a few dating possibilities, penpals or friends that are going through the same struggles you are.

[8Curvey8]

Hey Jason,

I'm in the same boat as you right now. Months of off and on sickness, can't eat, losing weight, every morning takes hours to recover after going to the bathroom... I completely understand the lose of hope. I'm crying everyday ~ trust me I know.

I wonder myself if I have parasites but am too nervous to do a cleanse. But I did read while researching that you usually have to do it twice because there may be eggs that hatched. If you felt better on the cleanse before, it may be able to help you again, if you can't find the source. I too am waiting on test results for 2 weeks. My natureopath helps a lot, and I am seeing a GP, so I have 2 doctors trying to figure this out. You may want to try a Natureopath too.

Stay strong, talk to you Mom, get some support, don't do this alone. Keep writing here too, there are lots of amazing people that will help you and us get through these times.