New, Tired Of Feeling Sick, And Desperate For Advice! (Long)

[jyogalove]

Hello everyone,

 

I'm new here. I'm so glad to have found this board, after a year of feeling sick, alone and confused. I desperately want to feel truly healthy again, and will do anything to get there.

 

Last fall, I started to struggle with constant abdominal pain, terrible nausea, diarrhea, fatigue and really severe acid reflux. I went to a GI doctor, who did an endoscopy and diagnosed me with gastritis. She said that all of the problems that I was having were because I was coming back from a relapse of bulimia over the summer, and that my stomach needed time to heal. I had also had quite a few infections in the months preceding, and had been on antibiotics for each, which she said was contributing to the stomach issues. She prescribed omeprazole.

 

Things continued to get worse. I started having strange episodes (sometimes shortly after eating, and sometimes a while after) where I would become dizzy, lightheaded, nauseous, clammy and pale. There were a few times that I thought I was going to faint; I would barely be able to walk. My gait would be unsteady, and I was weaving all over the place, almost as though I was drunk. I went to my GP, who completely dismissed me. A friend referred me to her GP and I went. He was very nice guy, but he chalked this up to episodes of low blood sugar. He told me I needed to eat more regularly (due to my eating disorder history, he thought that I was restricting my food intake). I told him that that wasn't it, and if I wasn't eating enough, it wasn't because of the eating disorder-it was because I felt terrible all of the time. At this point, I was nauseous and had abdominal pain pretty much 24/7. I also started to experience joint and muscle pain-sometimes it would be so bad that walking was a problem. I started to live on advil, which clearly wasn't helping the stomach pain, but I just didn't know what to do.

 

He ran tests, suspecting (based on some other issues and family history) PCOS or an autoimmune issue. Everything came up negative. My doctors started chalking all of this up to anxiety-the stomach pain, the dizzy/faint feeling, everything. And the joint pain-well, you have a family history of arthritis. It happens.

 

I felt like I was at a complete loss, and I was nearly non-functional. I felt terrible all the time-like I had an awful, never-ending case of the flu. Days where I only felt "bad," rather than absolutely terrible were, sadly, amazing. I was constantly having to cancel plans and called in sick to work a lot (which felt very stressful, but luckily, my supervisor was extremely understanding). 

 

I started to wonder if maybe this WAS all in my head. In early spring, I was exhausted and tired of explaining myself. I felt like my friends and family were all starting to think I was a crazy hypochondriac. I resigned myself to living this way.

 

Because my stomach was always hurting, and I was nauseous so much, I tended to eat mostly carbs-a salad does NOT sound appetizing when you're nauseous! I pretty much lived on saltines. One day, by chance, I happened to not have any carbohydrates (which meant no gluten)….I noticed a shift the next day. Abdominal pain, nausea and joint pain were a tiny bit less. The thought that this might be gluten-related popped into my head. I decided to (with my limited knowledge) cut out gluten for the next few days….and lo and behold, I started to feel a tiny bit better. Less exhausted, GI issues a bit better, joint pain significantly less. I still didn't feel great, but it was enough of a shift that I decided to pursue the gluten thing.

 

I got a referral to a different GI dr, and she is wonderful. She BELIEVES me and thinks the problem is systemic….and just feeling heard is amazing. She did a blood test for celiacs, and it came back negative. I have an endoscopy scheduled, and she told me that she wants to do a biopsy of my small intestine, which I believe is to do a genetic test for celiacs. Besides that, I'm not sure what she is looking for.

 

I'm pretty confused and even though I have more hope now, I was wondering if anyone on here would be willing to help me (any guidance would be very much appreciated :-) )

 

1. She thinks that I might have Non-Celiacs Gluten Intolerance. How is this diagnosed? What questions should I ask? How is this different from Celiacs?

 

2. She said that I need to eat gluten for about 4 days before the endoscopy. I am terrified. It seems like since cutting it out, my symptoms have gotten much more severe if I do accidentally eat gluten. Most recently, I ended up with the most severe abdominal pain I have ever been in, throwing up half the night. I was told later by my doctor that if that ever happens again to go immediately to the ER. How on earth am I supposed to get through 4 days of eating gluten? I have work! Does it sound accurate that I need to be eating gluten to be accurately diagnosed?

 

3. Food fear. I have become terrified of food and eating, because I don't want to get sick. Because I feel so limited now, I don't even know WHAT to eat half the time. I'm completely overwhelmed, I am losing weight and feel very weak because I'm not eating enough. I'm so tired of not feeling well. Can anyone relate to this?

 

4. How long after you cut out gluten does it take to really feel well? I feel better now, in that I'm not non-functional, but still not great. Very, very tired, stomach, joint/muscles still not awesome. Rather than hitting up a yoga class when I get home at night, I crawl into bed. I'm so tired of this and just want to feel like myself again. 

 

I know this was super long-if you got through this and have advice for me, thank you!!!

 

-J 

[CajunChic]

Sorry you're feeling so terrible, hope you get answers soon! First, it is not all in your head!! We've all heard that more than once, unfortunately. I know others will comment with more info and helpful links, but I'll try to help out.

1. NCGS is diagnosed when celiac is ruled out and you are certain gluten is your issue. It is different because it does not damage the small intestine the way celiac does, an auto-immune response. Although symptoms are pretty much identical.

2. Keep eating gluten now! 4 days is not long enough if you've been gluten-free for a while.there are different recommendations as to how much to eat, I believe it's the equivalent to 2-4 slices of bread a day. The suffering may be too much, so be careful. You may opt to not follow through and go gluten-free because you know it will help you. Many people opt out of the gluten challenge because it was too rough. The dr is looking for damage to the small intestine caused by gluten. If you're celiac, it heals once going gluten-free and can make the test negative.

3. Each person is different, but I think most celiacs agree that a whole food diet is best for healing. Dairy is a big offender to us due to damaged guts, or an intolerance. I'd cut it out at first to heal. Then other foods can bother you if you're intolerant, either temporarily while you heal or permanently. Keep a journal and see how you feel on some foods.

4. Again, everyone is different. You can see results in weeks, months, or years. Depends on damage and other intolerances if any.

Eat well, rest often, and good luck!

[S23]

Hey Jyogalove, 

 

Seems like you've been having a pretty rough time!

 

I think all of us have been through similar but different journeys that have eventually brought us to feeling at least a little better and healthier. I'll avoid telling you my long history and skip ahead to things that I discovered made me feel better. These things may or may not work for you; everyone of us has a different body and our bodies have different reasons for functioning the way they do and reacting to different remedies and foods.

 

Acid reflux: I had severe reflux and was bed ridden from nausea. I discovered Manuka Honey. It healed the valve that closes off the oesophagus from the stomach. I ate it with every meal and now I only need it so often. It worked wonders for me.

 

 Antibiotics :  Ruin healthy gut bacteria it is so crucial with any stomach issues to take good probiotics. I personally use Metagenics (requires refrigeration) or Jamesons chewbles when traveling. Instead of taking antibiotics when sick try Oregano Oil. I used it for the first time last week and was amazing in chasing a way a cold. It too kills good and bad bacteria, but in a more natural way (be sure to take Probiotics always to help restore good gut flora). PS> Yogurt will not cut it. 

 

Gluten Free Diet: I was diagnosed with Celiac Disease. I wont spend time explaining the difference between Celiacs and gluten intolerances because you can get that info anywhere. What I will tell you is that even after going strictly gluten free I was still sick. My energy levels were so low I needed to sleep all the time, I couldn't keep up with work and I was nervous to go out with friends still.

 

Having celiac disease created an eating disorder for me, I was terrified of every food that went into my mouth because I was still getting sick. So I understand this may be double as difficult for you, just over coming an eating disorder. I ended up only sticking to whole foods, eating clean, organic and non processed foods. what really helped me was trying SCD (Specific Carbohydrate Diet). 

This diet is not for the weak at heart. It was the hardest thing I ever had to do. This diet goes beyond cutting out gluten and involves cutting out ALL grains, sugars and starches. I sing its praises because it was the only thing that made me feel like myself again, happy and healthy. I recently strayed from it and noticed a huge difference and now am paying the price feeling sick again

 

The main theory behind it is only consuming foods made up of one molecule. Monosacarides (Probably spelled wrong). Because they are easier for the body to digest.  Cutting Sugars eliminates and bad bacteria growth that may be remaining in your intestines for it to heal. Starches and Carbs are just harder for the body to break down.   

 

All your other relating symptoms should eventually fade away, once gluten is cut out. I may not have answered all your questions. But I hope my insight helps! 

 

Remember to be your own advocate, don't always believe doctors, listen to your body and do your RESEARCH. Its really and truly all about the types of foods we are putting in our bodies.

Jennifer's Way is a good book to read, these forums are all good to read too  

 

Cheers!

[1desperateladysaved]

JYoga love: What a hard story!  I know a similar story to your story, so I really feel for you.  Now, I think you are setting out in the right direction and I am excited to hear what happens next!

 

We usually hear that GI doctors recommend a gluten challenge (eating gluten before the biopsy) weeks long rather than days.  Otherwise you could false negative on the biopsy.  I know that eating gluten again is hard once you stop and feel better.  The biopsy checks the villi of the small intestine to see if they are normal.  When one has celiac these small projections break down.  Their job is too absorb nutrients.  The very good news is that when one stops eating gluten that these villi get a chance to heal.  That damage is reversible.  One day they can start absorbing food nutrients better again.  The idea of the gluten challenge is to be sure the doctor can see (with a microscope) the damage and make a definite diagnosis.

 

Have HOPE!  I came through 30 years of foggy fatigue and now I feel better again.  I have hope that you will soon be writing about a similar improvement!  Best wishes in healing.

 

Dee

[kareng]

Open Original Shared Link

 

"A gluten challenge is the period of time when gluten is added back into a person’s diet to assist in the diagnosis of celiac disease. Antibodies take time to build into the blood stream before they can be detected through blood analysis. For a gluten challenge we recommend eating 1/2 slice of bread or a cracker each day for the duration of the challenge.

• Prior to blood testing we recommend 12 weeks of eating gluten.
• Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

[kareng]

Hey Jyogalove, 

 

Seems like you've been having a pretty rough time!

 

I think all of us have been through similar but different journeys that have eventually brought us to feeling at least a little better and healthier. I'll avoid telling you my long history and skip ahead to things that I discovered made me feel better. These things may or may not work for you; everyone of us has a different body and our bodies have different reasons for functioning the way they do and reacting to different remedies and foods.

 

Acid reflux: I had severe reflux and was bed ridden from nausea. I discovered Manuka Honey. It healed the valve that closes off the oesophagus from the stomach. I ate it with every meal and now I only need it so often. It worked wonders for me.

 

 Antibiotics :  Ruin healthy gut bacteria it is so crucial with any stomach issues to take good probiotics. I personally use Metagenics (requires refrigeration) or Jamesons chewbles when traveling. Instead of taking antibiotics when sick try Oregano Oil. I used it for the first time last week and was amazing in chasing a way a cold. It too kills good and bad bacteria, but in a more natural way (be sure to take Probiotics always to help restore good gut flora). PS> Yogurt will not cut it. 

 

Gluten Free Diet: I was diagnosed with Celiac Disease. I wont spend time explaining the difference between Celiacs and gluten intolerances because you can get that info anywhere. What I will tell you is that even after going strictly gluten free I was still sick. My energy levels were so low I needed to sleep all the time, I couldn't keep up with work and I was nervous to go out with friends still.

 

Having celiac disease created an eating disorder for me, I was terrified of every food that went into my mouth because I was still getting sick. So I understand this may be double as difficult for you, just over coming an eating disorder. I ended up only sticking to whole foods, eating clean, organic and non processed foods. what really helped me was trying SCD (Specific Carbohydrate Diet). 

This diet is not for the weak at heart. It was the hardest thing I ever had to do. This diet goes beyond cutting out gluten and involves cutting out ALL grains, sugars and starches. I sing its praises because it was the only thing that made me feel like myself again, happy and healthy. I recently strayed from it and noticed a huge difference and now am paying the price feeling sick again

 

The main theory behind it is only consuming foods made up of one molecule. Monosacarides (Probably spelled wrong). Because they are easier for the body to digest.  Cutting Sugars eliminates and bad bacteria growth that may be remaining in your intestines for it to heal. Starches and Carbs are just harder for the body to break down.   

 

All your other relating symptoms should eventually fade away, once gluten is cut out. I may not have answered all your questions. But I hope my insight helps! 

 

Remember to be your own advocate, don't always believe doctors, listen to your body and do your RESEARCH. Its really and truly all about the types of foods we are putting in our bodies.

Jennifer's Way is a good book to read, these forums are all good to read too

 

Cheers!

 

 

Don't let this post scare you - This isn't the typical gluten-free diet being described

.

[nvsmom]

Welcome to the board.  

 

I agree that a 4 day gluten challenge might be a bit short. If you can handle it, it might be a good idea to lengthen it to 2 weeks so there is a smaller chance of a false negative biopsy (it can happen in up to 20% of celiacs). Ensure a minimum of 6 samples are taken during the biopsy.

 

NCGS is much more common than celiac disease, and it seems much harder to diagnose.  The only consistent way to diagnose NCGS is by a positive response to the gluten-free after a few days, weeks or months gluten-free.  Some doctors believe that the anti gliadin antibodies tests (AGA IgA and AGA IgG) MAY show NCGS and/or celiac disease when positive but those tests are not very sensitive or specific so doctors often skip them entirely - too high a risk of a false negative.

 

NCGS has all the same symptoms of celiac disease except the damaged intestinal villi or the dermatitis herpetiformis rash..  It is not considered to be an autoimmune disease like celiac disease, but is thought to be an innate immune reaction to gluten - a type of food sensitivity.  It's not to be thought of lightly though as it can cause pain, neuropathies, anxiety, cognitive issues and other serious problems.

 

If you prepare your own foods, that should remove some of the fear. Having complete control over what goes into your mouth should keep you safe as long as you read all labels, and try to stick to whole foods like veggies, fruits, meats, eggs, some grains like rice, and dairy (although about half of all celiacs are lactose intolerant until they have healed so if you suspect it is a problem you may want to skip it for a while).  Rice noodles are a good substitute for normal noodles (don't over cook them or they get yucky). Try a gluten-free bread like Udi's for toast.  Buy yourself some gluten-free treats like cookies or corn chips... Eating at home isn't too hard after the first month of label reading, it's eating out that will remain tricky and to be honest, I usually skip it or bring my own food and just buy drinks.

 

Recovery after going gluten-free can really vary. A minority feel perfect within a couple of weeks, most notice some improvements within a few days and then improve (and regress) in small leaps forward and back over a 3 to 9 month period until they are well.  Another small minority takes years to get well (but we seem to be the ones with multiple autoimmune problems and who went undiagnosed for many many years). Chances are that it will take you a few months to get well with a few set backs along the way.... I have found that celiac is an effective way to develop patience.  

 

It is hard to change your whole way of eating and thinking about food never mind doing that while recovering from a chronic illness. Hang in there and be good to yourself.

 

ps.  If celiac disease is the culprit, get your family tested as celiac disease is a genetically linked disease.

[jyogalove]

Thank you all so much for the feedback! It's very much appreciated. This is going to take a lot of getting used to! I can use all the advice I can get.