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jasonD2

For The Love Of God Can Someone Please Help Me?

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I'm on a business trip in Baltimore and im on the 10th floor of my hotel staring out the window and thinking to myself that jumping is the only way to end the complete misery that I am in right now.

I just had an incredible summer, met a wonderful girl, kicking ass at my job and now all of a sudden all my upper GI symptoms have returned in full force. I can barely eat and when I do i have this heaviness in my abdomen for hours after a meal..i keep burping, have a lump in my throat and feel like i need to keep swallowing to clear the mucous that keeps coming up. My duodenum is burning and I almost want to vomit to alleviate the pressure that has been building up for the past 4 hrs. I look horrible...I am so skinny and look so unhealthy. Yet i am starving and want to keep eating but i can't. All the progress I made over the past few months is gone...im depressed again and my eyes are filling up as i type this. i left messages for my doctors and they havent gotten back to me. im hopeless and helpless again and am bracing myself for another long cold winter of total hell.

Please dont tell me to see a shrink..trust me i dont need therapy...i need to feel better physically. i had zero stress all summer and I didnt even know what the word depression meant anymore.

please tell me what do do


Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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(((hug)))

For starters, back away from the window. This WILL pass and you WILL feel better again. I have been deeply depressed and I know that feeling of hopelessness. The worst part is that you don't believe it will end but I promise it will.

You're traveling, did you get into gluten? There isn't a whole lot to do except ride it out. It sounds like you need to start making a list of what's changed. Maybe it's partly winter weather that's depressing you, but start thinking hard about what's different as far as diet. I also remember ragweed and leaf mold allergies really messing with me in October in that part of the country.

This board is great and I know other folks will have more ideas. Please, hang in there. Life IS worth living.

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Hey Jason,

Hang in there man. You're not giving us much to work on here. It's tough to eat on the road. What's your diet been lately?

best regards, lm


gluten-free 12-18-06

colonoscopy, upper GI
blood, urine, stool tests, prometheus panel
positive endoscopy/positive duodenal biopsies (severe villous atrophy, high intraepithelial lympocytes)
diagnosed celiac disease by Gastroenterologist Andrew R. Gottesman, 12-18-06

"Sobriety sucks. That's why they invented booze in the first place." Denis Leary - Rescue Me

Beware the chocolate of Chiapa

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Oh hon - so, so sorry!!

Please, hang in there. Truly, I know it's so freaking hard when it takes forever to resolve, when we just get sick over and over, and it feels like it is just not going to resolve. When we start to think we're going the right direction and then just get dumped right back on our butts where we feel as horrible as we did before. But please don't give up: you can do this. I'm not saying it's not horrible and painful and just soul crushing sometimes, but just...just get through today. One more day. and then tomorrow, just try to get through the day. Find one thing to enjoy that day, whether it's a good joke or a nice cup of coffee, something.

There's always something good, even if the bad clamors for you to just pay attention to it and nothing else.

And really...I may not be going through the same thing, but I can definitely say that I can sympathize on a very personal level with this constant illness and loss and feeling like crap. And the depression - that has troubled me greatly, too. I just got back from a trip a few days ago - my first one since I really started having trouble, and had something similar - just felt horrible, even though I was trying so hard to stay health and gluten free.

In the last year, I've had my diet go down to 5 foods at the worst point, up to 9 foods at the best - that's including my salt. I started having reactions to smells and food that made breathing so difficult I was trapped in my house and had to go out with a mask on, and could only stay out for a couple hours at a time. I lost tons of muscle mass and my hair is still falling out (and I'm a woman!) - I look like crap. My skin looks like I'm decades older: I'm 38 and I got asked if I wanted the senior discount when I was at the store a few weeks ago. I wanted to go home and just lie down and cry.

Really, I know how awful it is. If I could reach over there and give you a shoulder to cry on, I'd do it. Probably cry right along with you. I freaking hate how our bodies can screw us this way. But you can get through this. Maybe sometimes just by getting through an hour, or a day, but you can do it.

I don't know exactly what's happening in your body, obviously, but maybe some ideas?

1. Maybe check all your foods and lotions, etc...? It could be that a food that WAS safe now no longer is. Maybe they changed ingredients, or they changed one of their sources for their ingredients so that it has higher levels of gluten now? Maybe something is now being processed on the same lines so there is contamination now. Or maybe you have become a bit more sensitive and now are reacting to a previously safe food. I have noticed that a few gluten-free foods that my daughter can have are big honkin' 'no way' foods for me, although I thought for a while that they would be fine. I have been having trouble with many of the grains due to contamination, best i can tell. I react to even less gluten now than I did when I was first diagnosed. :(

The fact that your depression has returned makes me really, really think that gluten is somehow responsible, or one of your other food issues. Maybe cut way back for a few days? Just get some fresh fruits and veggies, a few totally plain meats that are processed in a place that doesn't process gluten, no grains, and see if that helps? Even if it just helps the depression, it would be worth it.

I know my own experience is not everyone's, but so many times now when I have been having trouble again, it has turned out to be gluten. Like using an oil that everyone said was gluten-free {Spectrum brand), and it turns out they have started processing wheat germ oil on the same line as their other oils. When I dropped the oil, I started feeling better again. But it took me months to figure this out. This has happened with a number of other things, now, too, so my first response now is to just cut out my food back to the bare minimum, getting rid of grains and nuts and seeds, since so many of them are processed and transported with wheat, rye, or barley.

So far, that has helped nearly every single time. I don't know that it will help you, but at least it might give you something to do, to focus on to help you get through the next few days until you hear back from you doctor, perhaps?

Some other ideas (but probably less likely)

2. Perhaps you got an H. pylori infection? That might explain the high level of acidity?

3. Have they checked you for a hiatal hernia? A friend of mine developed one of these and they had many similar feeling: the acidity and that feeling of having a huge lump in their throat.

Seriously, hang in there. You've got some wonderful people here who would be happy to help you through this the best they can.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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I can totally relate to your hopeless feelings. Every time my gastro symptoms returned (and I suspected I had another gut bug), I wondered if I would ever get better. However, I suspect your indigestion comes from:

(1) Your diagnosed gut bugs (klebsiella, enterobacter cloacae and hookworm), which are overwhelming your good bacteria, hindering digestion in your intestines and making upper gastro digestion more difficult;

(2) Low stomach acid (you mentioned in your PM that you can no longer tolerate HCl supplements without pain).

I had that same situation when I had a parasite in my intestines and H. Pylori in my stomach. Before then I could take HCl capsules and digest easily. However H. Pylori damaged my stomach enough that HCl supplements burned too much to tolerate. So I could no longer take HCl. Then I had really bad indigestion (constant reflux of acid, mucus and even whole undigested food). Several times I stopped fighting the reflux and just threw up (because it was coming up anyway) just to relieve the pressure in my gut.

I don't know what else besides H. Pylori would damage your stomach lining so you could no longer tolerate HCl supplements. However, taking L-Glutamine dissolved in water 2x daily healed my stomach enough that I could resume HCl supplements. I also had to kill the H. Pylori with mastic gum. Whether or not you have HP, taking L-glutamine could only help heal your stomach and duodenal area. Can you find a local nutritional store which sells you L-glutamine? Is there a Super Supplement store in that area?

I'll PM more, but wanted to at least say I totally understand how you would feel so hopeless after sooooo many recurrences of gut infections and gastritis. Been there, done that .... SIGH

SUE


Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.

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oh no jason- im sorry you,re feeling this bad. Breathe and know this is temporary! you said it feels like your duodenum is on fire??? Is it possible you just got an ulcer?? Can you take some zantac and peptobismol till you can get to your doctor?? try to relax and know you,re not alone-- inthe abdominal pain or the depression --seriously. I hope you feel better soon!!!


1986- Elevated Speckled ANA/no Lupus.negative Sjorgens

2008- AntiGliadin IGA/IGg~ Negative,TTG IGA/IGg~ Weak Positive, Endomysial Antibody~ Positive, IGA Deficient.

no biopsy (insurance denied)

6/2010- Enterolab Gene Test:

HLA-DQB1 Allele 1 0302

HLA-DQB1 Allele 2 0302

HLADQ 3,3 (subtype 8,8)

7/2010- 100% Gluten Free

8/2010- DH

10/2010-Hypothyroid dx-> 12/2010 Hashimoto's dx + 1/11- Graves dx :(

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I'm on a business trip in Baltimore and im on the 10th floor of my hotel staring out the window and thinking to myself that jumping is the only way to end the complete misery that I am in right now.

I just had an incredible summer, met a wonderful girl, kicking ass at my job and now all of a sudden all my upper GI symptoms have returned in full force. I can barely eat and when I do i have this heaviness in my abdomen for hours after a meal..i keep burping, have a lump in my throat and feel like i need to keep swallowing to clear the mucous that keeps coming up. My duodenum is burning and I almost want to vomit to alleviate the pressure that has been building up for the past 4 hrs. I look horrible...I am so skinny and look so unhealthy. Yet i am starving and want to keep eating but i can't. All the progress I made over the past few months is gone...im depressed again and my eyes are filling up as i type this. i left messages for my doctors and they havent gotten back to me. im hopeless and helpless again and am bracing myself for another long cold winter of total hell.

Please dont tell me to see a shrink..trust me i dont need therapy...i need to feel better physically. i had zero stress all summer and I didnt even know what the word depression meant anymore.

please tell me what do do

First of all I agree about backing away from that window.

I was feeling like total crap all summer long (I kept thinking that life isn't worth living feeling this way) and this is after a year of being Gluten Free. I finally went to see an ND (Naturapathic Doctor)not my MD he always brushed my symptoms off or blamed my problems on being overweight.

It was the best money I HAVE EVER SPENT. She did some testing (saliva) and listened to my whole health story. I couldn't handle anymore stress. I was exhausted and by noon I was done for the day. She put me on some herbs (I was skeptical, but praying that this was going to work). I started to feel human for the first time in years. My results came back that my hormones where a mess and my adrenal glands were barely keeping up. I couldn't handle any stress. I'm finally feeling better. Please contact an ND because they look at the whole patient and look at their personal health story compared to the MD who only look at current symptoms.

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I would suspect that you got glutened somewhere along the way and with all of the beasties inside you making your system out of balance it has worsened your reaction. :( That or being without the reactions for so long has severely lowered your tolerance for such pain.

In a hotel traveling, have you made sure that your lotion, shampoos etc...are gluten-free? Gluten can get through the skin, not only have I known this from first hand reactions but my Doc said they finally did a scientific study and it confirmed what we have been saying for years.

A resounding second from me on seeing an ND.

And a big huge hug :wub: for all you have been through.


Grain Free

Casein Free

Soy Free

Refined Sugar Free

Preservative Free

Free Range

Free Willy

Freedom's just another word for nothin' left to lose...

...dang...there goes chocolate... :bawl:

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Thanks All- woke up feeling better but now im just afraid to eat. Don't think gluten is the culprit since this all started when I was eating at home for a few days & i usually dont react this way from gluten anyway. Also dont think its h pylori since i just had 2 GI tests and that organism was not identified. Guess I'll just ride this out and pray that it doesnt last 5 months. Thanks again for listening to me vent and all your support!

Jason


Endoscopy & blood panel all negative 12/09 after being strict w/ gluten free diet

As of 8/09 - Candida Overgrowth, C.difficile overgrowth, elevated fecal anti-gliadin, elevated putrefactive SCFA's

Developed severe lactose intolerance, IBS and food sensitivities in 02 after contracting Giardia from a river in Oregon

Had negative celiac blood work in 02

Elevated stool anti-gliadin Ab (21 with 10 being cutoff for normal) - 2008

Positive for DQ8- 2008

Tested high positive for egg, dairy, soy, ginger, mustard - 2008

Lactulose/Mannitol (leaky gut) test indicated slight intestinal permeability

Improved with gluten free diet but still have spastic constipation

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I just wanted to say that I've been in a similiar state of mind in the past, the complete hopelessness about ever getting better and the pain about what you are missing out on. It's truly awful.

Your health situation seems complicated and you clearly have a lot of different factors to weigh up when deciding what to do. I hope you are able to find something that you can eat soon and that the pain dies down. I know I went through periods of time where if I had the option not to eat at all I would have happily gone with it.

I don't have the expertise to suggest what you should do next to identify what's going on physically. I know you said you don't want to see a shrink, but have you tried? I'm not suggesting it because I think the problems are in your head, but because your health problems are very real, and hard to deal with. I found it very helpful to see someone when I was feeling quite unwell, both physically and with depression, and although it didn't help my physical pain it did help me to manage how I was feeling. It was also great to have someone that you don't have to hold back with, I know I didn't feel comfortable really letting my friends know how bad I was feeling at times.

Either way I'm glad you're feeling a bit better today, and I hope things continue to improve.

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I can totally understand, having been through massive depression in the past. Before I went gluten-free I would cry myself to sleep every night ,month after month, now when I look back on it, I'm not even that sure what I was so torn up about; just a general feeling of hopelessness. In any case, it really was scary, and totally debilitating. I often would have emotional outbursts in inappropriate situations. I had no control over these crying spells, and really just learned to withdraw from people in order to hide it, because it could happen any time. Things are much much better now, and it's not that I don't have anything to be depressed about. Having dermatitas herpetiformis on my scalp and face, i can't even think about finding a girlfriend or wife, it's so disgusting and unattractive. I've struggled so hard with not feeling good about myself because of this affliction, not to mention the relentless physical pain. It's slowly healing, but my patience ran out a long time ago. I can't work using the skills I have because of celiac, because I was a chef, and can't be around gluten at all.I'm so sensitive to it, I was getting exposed constantly at work, and wasn't getting better. I also used to do plumbing, but can't do that, because I'm alwas getting staph infections, so figure it's probably not a good idea to expose myself to heaps of bacteria. My Dad passed away 5 months ago, and was far away the most important person in my life. The family I have left over doesn't support me with my health problems, and just poo-poos me. It's really easy to feel like the deck is just stacked against me, but I'm stubborn, and I don't give up. I try to keep my chin up, and all the support on this board has helped immensly, so I'm glad you posted this right now. Believe me, you want to live. You can't be passive, and get better. This takes work, you have to get proactive. I agree with the idea of just eating veggies, meat and fruit, and nothing packaged or processed. This is what I attribute the improvement with my depression to. It's worked wonders for me, no kidding. Some people on this board seem to eat out often, but I don't because I know I'm so sensitive to CC it's just not worth the risk to me. If there is gluten in that kitchen I'm not eating anything that comes out if it. It's a sacrifice, but it's worth it, but my point is that I had to get proactive about this, and just make a stand. If you've had these problems with depression for a while, they are not going away by themselves. I wish I could wave a magic wand and make it stop, but I can't . This adversity you can overcome if you focus, and work on it, but you have to work, and work is a four letter word; you can't coast and get better.

I've had to drop a lot of activities and fun things in order to make getting better my number one priority, and it's been tough, but it's been paying off, I can function better all the time.

I just got to the point to where nothing besides getting better really mattered to me anymore, I kind of hit bottom, and said enough is enough. Watching my Dad die of cancer, besides being devastating to me, was also a wake up call.

Remember, the only place results come before work is the dictionary

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Hey Jason - have you been able to find a local support group where you live? I'm just thinking it may help for you to have people in physical proximity that know what you're going through...I don't know what I would do without mine.

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Seeing a therapist doesn't make you a mental case, or mean you have one. It means that you're getting professional advice on handling a situation that you can't currently handle. Now, if you do all your own car maintenance, house maintenance, health maintenance, and so on yourself, maybe you don't need help from a professional for anything, but I have yet to meet a person who fits that category.

What has changed since the summer? It may or may not be food related.


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

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Seeing a therapist doesn't make you a mental case, or mean you have one. It means that you're getting professional advice on handling a situation that you can't currently handle. Now, if you do all your own car maintenance, house maintenance, health maintenance, and so on yourself, maybe you don't need help from a professional for anything, but I have yet to meet a person who fits that category.

What has changed since the summer? It may or may not be food related.

Hi Jason. I'm a little late on this but glad you awakened this morning feeling a little better. This may sound difficult for a man, but when you feel that bad, are you willing to just go back to bed, pull the covers over your head, and just cry cry cry? I had a good one last night.


I love what I do, and feel that it matters. How could anything be more fun?

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Seeing a therapist doesn't make you a mental case, or mean you have one. It means that you're getting professional advice on handling a situation that you can't currently handle. Now, if you do all your own car maintenance, house maintenance, health maintenance, and so on yourself, maybe you don't need help from a professional for anything, but I have yet to meet a person who fits that category.

What has changed since the summer? It may or may not be food related.

I agree with Tiffany. The reason we suggested getting professional help is that it would give you better coping skills for getting through these down periods. Nobody is suggesting there is anything wrong with your head :rolleyes: but you do need to find a way of handling these symptoms better. Glad you are feeling better today :)


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Jason,

I'm so sorry you're feeling so terrible. I agree with you that you need to see a doctor. One thing to check for is gastroparesis which is a partial paralysis of the stomach. The symptoms you mentioned can all be from delayed gastric emptying. I myself have idiopathic gastroparesis that comes back from time to time with no warning. The burping, gurgling, lump in throat, severe pain after eating only a small amount, and weight loss are all things I struggle with when it rears its ugly head.

Google it and see if it makes sense. If so, you will need a gastric emptying test. That will tell how long it takes you to digest the egg. If it's delayed significantly, then a diagnosis of gastroparesis is made.

Hang in there. I do hope you're feeling much better soon. Please feel free to email me privately if you have any questions.

Jillian


Jillian

*******

I was dx Celiac 2008 + casein, soy, legume, & nightshade intolerant; dx hypothyroid 2006

14 yr. old daughter dx Celiac + plus casein & soy intolerant 2008

12 yr. old daughter dx gluten intolerant 2008

9 yr. old son dx Celiac 2008 + casein intolerant. DH Rash.

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I wonder what changed? I have seen this before on the board. We do well, we feel better then something changes. You hang in there. Nothing lasts forever :( Try to track down where the change started?

Tiff


Started exhibiting symptoms 1979

DXed IBS 1987

Self Dx Gluten sensitive via elimination diet July 2010

Gluten free since July 12 2010

Carb&Sugar light August 2010

experimenting with being Grain light

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