Getting Desperate

[Eclara]

I was gluten-lite for about two years before I did an 8 week gluten challenge for an endoscopy in December. I had horrible symptoms the whole time, but my biopsy came back negative. I went gluten-free the day after the endoscopy, so it's been 9 months completely gluten-free. It took awhile, but most of the symptoms cleared back up. But I developed upper stomach symptoms during the trial that haven't gone away and have gotten worse and worse. I kept losing foods- dairy, then eggs, then grains, then fruit...I got to the point where I was eating plain lunch meat for half of my meals, and peanut butter mixed with kefir for the other half. Now I can't eat anything without bloating and getting nauseous, and I can't figure out what's a legitimate intolerance and what's just my stomach. My stomach has shrunk so much I can eat maybe a fourth of what I could before, which absolutely doesn't help.

I've been to three gastros and one normal doctor, and none of them have believed me when I told them eating gluten triggered this. None of them even believed me when I told them I was gluten intolerant, or that I was having trouble with other kinds of foods. One diagnosed me with acid reflux and put me on acid reducers, which made it worse. One diagnosed me with bile reflux and put me on Carafate/sucralfate, which seemed to help for a week before it stopped doing anything. One diagnosed me with IBS and suggested anti-depressants, which I (somewhat) politely declined. The last one (the one who actually told me to do the gluten trial in the first place) literally shrugged and told me to "keep doing what you're doing". My CT scan came back normal, the ultrasound of my gallbladder, liver, and upper and lower intestines came back normal, my HIDA scan came back at 80% with no sign of bile reflux, and the only thing that showed up on my colonoscopy/endoscopy was "mild chronic gastritis", which I was later told was too mild to cause symptoms? I'm losing my mind with this. I've been searching for a doctor to go see, but I just end up giving up after awhile because I really don't know if I can handle another doctor talking down to me and dismissing everything I say, and I don't know how to determine who will actually listen. Even my mom has now started to question if it's "in my head".

I don't even know what I'm asking. I just don't know what to do. I've stopped believing that I'll get better and I'm extremely depressed, I can't do this anymore! What should I do? I feel so lost.

[appletree729]

I couldn't read and not post.  I wish I had more to offer you though than some hugs and prayers.

 

One thing that you might consider is looking into 'food combining' to see if this is why you are so sensitive to so many foods.  The idea is that certain food categories (fats, proteins, carbs) are best eaten alone or in combo with only one other category.  

 

I went through a phase where I was also feeling so frustrated and tried a diet called the 80-10-10 diet.  Be warned - it's a bit extreme and I don't advocate it for the long term, but it's worth looking into.  It's great for me as a sort of 'reset' that I can do for a few days or weeks and I can't tell you how AWESOME I feel when I'm on it.  It's just difficult to sustain for some and I'm not yet convinced of it's long term safety.  But short term I think it's great - it's all wholesome, natural food and honestly, you get most of your calories from fruit and then eat a ton of leafy greens/salad.  You just have to make sure you are eating enough calories (which is a lot of fruit!)  But because you're not eating all the other stuff like fats with the fruit, it is easier for your body to digest.

 

Just a thought for you.  I do hope you begin to find some answers soon...

 

Here is a link to a vid...  I love this girl's videos and this one talks about her own personal story and has advice on diet near the end.  She's really down to earth...

[1desperateladysaved]

Sorry for you,

 

Hang in there.  There is help for you.  I know it is a hard time to search it out, but ya have to keep trying.  Could you cook some plain meat instead of lunch meat?  Just put a chicken or beef in a crock pot with some water and sprinkle with salt. 

 

Get Well.***

D

[Celiac Mindwarp]

Sorry you are having such a rough time. For what it's worth, a number of us have multiple intolerances and have had a tough time finding safe foods.

I am ncgi but have had many of the same symptoms as diagnosed celiacs.

A food diary may help you see any patterns over time, write down everything you eat in one column and symptoms in another

Plain foods might help. Maybe cook a chicken and have that, make broth from the bones etc as the base for a simple soup. Some people find they can eat well cook vegetables. Can you have eggs? Perhaps several small meals a day might be more comfortable while you get used to eating again, and find safe foods.

I hate to say it but peanuts can be hard on your system.

Don't give up hope, many of us have made it through. I was a mess after my gluten challenge, but got there with a food diary and elimination diet. I did whole30. I am now a year gluten-free and have my energy back, no reflux and lost all the anxiety and depression symptoms.

Good luck, keep asking questions

[GFinDC]

Hi Eclara,

 

I am going to assume that your "upper stomach symptoms" refers to pain in your stomach?  Not sure if that's what you meant though.  Anyway, a possible cause is h. Pylori bacterial infection.  You can have your doctor test you for that.  Or you can try treating it yourself and see if the symptoms go away.  A couple over the counter treatments are DGL and mastic gum.  The DGL seems to work faster.  Try taking them before bed. and in the morning and at noon.  If you don't see any improvement in 2 weeks time it is probably something else.

[answerseeker]

Have they checked for parasite or bacterial? Usually parasite will cause problems with everything you eat. It doesn't seem like gluten challenge can cause intolerance to food in general. If you can't even eat chicken or lean meats or rice then I would say this is something else.

I was diagnosed with GERD a year ago and when the GERD was at its worse I couldn't digest many foods. I completely lost my appetite because it hurt to eat. I took Prilosec for 2 weeks and haven't had problems to that extent, although I still get mild heartburn with certain foods

[notme]

food journal absolutely  and are you taking probiotics ?  i haven't had any experience with h.pylori or parasites, but it would be a good thing to get ruled out.  sorry you are having such a rough time (and ibs isn't a diagnosis, it's a cop out.  it stands for 'irritable bowel syndrome'  oh, please, no kidding my bowels are irritable.............)  many of us do "lose" foods for a little while.  if gluten is your problem, then the food journal can help you identify problem foods and if you skip them while your guts are healing, then you may be able to add them back in later.  good luck and I HEAR YA!  stoopit doctors  

[GottaSki]

Food/Symptom Journal is essential.  I also second the trying simple baked chicken or bone broth to start with cooked vegies...raw can be tough on a damaged digestive system.  Try eating just plain meat and vegies with a small amount of fruit for a week to see if you improve...if you can get your system to settle then add one food (whole food, not food group) at a time with at least three days between trials as not all reactions are immediate.  

 

Nothing processed.

 

The items that you are consuming are all potentially tough on your system and not enough nutrition for your body to heal:

 

Processed meats -- substitute plain chicken, pork, beef or fish

Peanuts - are a legume, not a nut -- perhaps substitute almonds after your system settles.

Yogurt - some have trouble with any fermented foods....after you have improved perhaps try hard cheese or butter to see if you have a dairy issue.

 

Hang in there....as mentioned some of us lose foods until our systems can heal, mine happens to be one stubborn system and is taking years to heal....but many I have met have only had to remove some foods for six months to a year and then got them back -- which is common.

[Eclara]

Upper stomach symptoms for me means extreme bloating and pressure, sometimes nausea, and sometimes cramping. I sometimes bloat out so far that I can't fit into my pants comfortably anymore. It usually feels like throwing food into a balloon that's stretched to capacity, and it often feels like the stomach lining itself is very irritated and sore. Overall I'd say it's very similar to if you ate a meal that was waaaay too big for you and had to sit and ride out the discomfort until it digested fully.

I was tested for H. Pylori during my endoscopy, and it came back negative. I am taking probiotics and digestive enzymes. I don't think anyone has checked for parasites, but I'd have to check my files to be sure. I've tried SCD and food combining.

The reason I have been eating what's listed is because they feel the least harsh on my stomach. Everything else causes more distress, even plain boiled chicken or bland cooked vegetables causes more distress than lunch meat. I will admit that I think when it comes to the chicken, a large part of it is mental. After eating it twice a day every day for 9 months, just the thought of eating it again makes bile rise in my throat. It's like how eating a food that tastes terrible to you can make you feel sick. So that one's on me, I'll try to see if I can find another way to cook it that will make it more tolerable.

I don't think I'm eating a specific food that's causing the stomach symptoms currently because it is every food that does it, it feels like my stomach is inflamed or damaged in some way, and I really think it began with the gluten challenge.

The most hilarious thing to me is that my original stomach complaint that brought me to the gastro initially (lifelong terrible constipation and lower stomach pains that literally felt like knives stabbing into me, which would leave me curled up with a heating pad for hours or days at a time and sent me to the emergency room on more than one occasion) have completely cleared up since going 100% gluten free. It only flares up when I get glutened or eat one of my other intolerances.

I went to see an internist today and she got very exasperated with me and said I had IBS, that "some people's colons just don't work right" and "if no one's fixed you yet after all this time, no one is ever going to cure you" so I'm hovering between depressed/furious right now. She also laughed in my face when I told her I don't eat soy in large part because of my hypothyroidism.

Thank you all for responding to me! It gets so overwhelming sometimes to have to deal with all of this, it's a huge weight off my shoulders to have someone listen and understand.

[appletree729]

Wow - don't go to that internist again!

 

And don't give up, even though the 'expert' internist seemed to suggest that this is what you need to do.  To accept this.  You're doing the right things by questioning/seeking answers and even though it's frustrating, keep doing it.  I would also look into finding another doctor for a second/third opinion and a fresh outlook on your situation.

 

I'm so sorry that you're struggling so much.

[deb-rn]

Wow - don't go to that internist again!

 

And don't give up, even though the 'expert' internist seemed to suggest that this is what you need to do.  To accept this.  You're doing the right things by questioning/seeking answers and even though it's frustrating, keep doing it.  I would also look into finding another doctor for a second/third opinion and a fresh outlook on your situation.

 

I'm so sorry that you're struggling so much.

OH my....

I feel so bad for you!  Looks like you've gotten some great advice!

I have felt "not well" for many years... but couldn't put my finger on it until this summer when the symptoms suddenly escalated!

I see my primary Dr today to see if he wants to test me.  No matter what the test says... I did my own mini test last week and it's gluten sensitivity... at the  VERY least!  I'm a nurse and will fight through this to get my life back!  Now I read that my depression, insomnia, weight gain, brain fog and other things could be a result!  I'm thrilled to at least have  SOME  idea of how to feel better... if not completely healed!

I pray you are guided to the right source to figure out your symptoms and get more complete relief!

 

Good Luck.

Debbie

[1desperateladysaved]

 . I've stopped believing that I'll get better and I'm extremely depressed, I can't do this anymore! What should I do? I feel so lost.

I have been there and am better.  I hope one day this story will be your story,

 

D