Trying To Figure This Out

[atb913]

Hello, my name is Anna and I'm new to this. I have a lot of questions so please be kind!

In 1999, when I was 21, I started having severe hives. My knees, ankles and wrists swelled up, became inflamed and hot, and my hands were so badly swollen I couldn't clench my fist. I passed out in my doctors office due to low pressure, was given a script for prednisone, and sent on my way with a recommendation to see a rheumatologist.

Since that time I have had severe angioedema that seems to be triggered by stress. I now have degenerative disk disease and spinal arthritis. I have fatigue and brain fog so badly that it feels like I constantly have the flu. I hurt every single day of my life, and my angioedema lasts for a month or so once or twice a year. My hair is falling out. I have gut symptoms too, but don't know the trigger, and have been dx'd as IBS.

So, in the past I've been tested for Celiacs (negative, but I don't know what type of test they used), positive for some salicylate reaction, lupus (negative, but that was nearly 12 years ago, it hasn't been revisited), chronic fatigue (inconclusive... my epstein barr was high, but they seemed dismissive).

All the doctors seem to agree that I have an unspecified auto-immune disorder, but they don't know the cause. I can't seem to lose weight to save my life. My joints are falling apart, my bones have lesions, I get constant kidney stones and had to have my gallbladder removed... I feel like an 85 year old woman trapped in a 33 year old.

I have decided to do an elimination diet. I went for about 48 hours without gluten and then broke down and had a biscuit. Lets just say that my stomach was NOT happy. I'm not 100% sure, but it looks like a gluten intolerance at the very least. I think maybe nightshades are a trigger as well as the salicylates.

Life isn't supposed to be this way. I have a 22 month old son that I adore but I'm too exhausted and in too much pain to play with him the way I should. I really don't know what to do anymore. I feel like I've chased so many dead ends, and that I'm starting to look like a hypochondriac. :/

Can any of you relate to this or help in any way? I'm starting to feel desperate.

[AgainstTheGrainIdaho]

You poor girl!!! I am SO sorry you have had to go through that! It really sounds like a celiac issue for sure not to mention how many other allergies you have too. First off have you ever had a blood test taken for allergies? If not, that would be a great idea. It sounds like you already know some of your possible allergens so avoid them for sure. I know that testing for Celiac Disease is so hard to actually get a true answer that almost 80% of the people I know with Celiac Disease never got a clear answer back and just did and elimination diet on their own. A lot of the symptoms you mention are those of Celiac or gluten intolerance. It's a big life style change but let me tell you....there are SO MANY resources out there for how to make those changes in a simple and easy way. Plus you will want to take special notice to your child because they have a 50/50 chance of having the same issues as you do and if you catch it sooner than later they will never have to experience as much as you did. I thought it would be hard to transition over with my family of 5, but it was quite easy once I decided it just has to be that way. Also it makes it easier because there are SO many resources out there Online, the Library, and in bookstores about diet changes and other hygiene products that contain the gluten, what to avoid and some AMAZING foods that you'd never guess were grain free! Open Original Shared Link is one of my new favorites! plus there's Open Original Shared Link. There are quite a bit more but that's a great start plus the section on here about foods and where to dine out are great too!! Good luck and I hope the elimination of gluten will help your body be able to recover. Keep reading through the posts on this site and you'll learn a ton of good stuff and there are a lot of wonderful people on here to help and answer.

[atb913]

It's very interesting to note that my mom was told to do an elimation diet on me when I was a toddler ('78-79) to find the source of my allergies. She tried the best she could but they didn't have any real resources back then. She was pretty healthy too, making me smoothies with yogurt (she said you had to get that from health food stores because it wasn't available in grocery markets), wheat germ, etc.

I also had ADHD as a child and she eliminated white sugar and bread. Lol, subbed it to rye and whole wheat bread.

Is it possible that gluten was the cause of the ADD too?

With my son, I'm already a bit of a label freak because he seems to have soy, colors, msg and tyramine sensitivities. I'm planning on switching him to gluten-free as well.

[AgainstTheGrainIdaho]

I've heard that ADD and ADHD are both HUGE reactions to allergies. In fact, I watched a whole show about a Teen correctional facility full of hostile boys that were in there for a bunch of different crimes and other mental issues and when they changes their diets to whole foods with NO processed food AT ALL( and no herbacides or pesticides), their behavior changed dramatically. I'm talking within days and other more serious cases were about a month.

I would definitely consider Whole wheat as a culprit to that. Elimination is such a great and true way to tell an allergy if you can't afford a $300-$500 blood test and visit to an allergy specialist.

[AgainstTheGrainIdaho]

Also, I just remembered, I do have a great friend that has 2 kids that show the ADD and her main cause IS wheat and gluten.

Crazy how a main staple of our diets can cause such mayhem!

[GFinDC]

  On 5/5/2011 at 9:43 PM, AgainstTheGrainIdaho said:

I've heard that ADD and ADHD are both HUGE reactions to allergies. In fact, I watched a whole show about a Teen correctional facility full of hostile boys that were in there for a bunch of different crimes and other mental issues and when they changes their diets to whole foods with NO processed food AT ALL( and no herbacides or pesticides), their behavior changed dramatically. I'm talking within days and other more serious cases were about a month.

I would definitely consider Whole wheat as a culprit to that. Elimination is such a great and true way to tell an allergy if you can't afford a $300-$500 blood test and visit to an allergy specialist.

Hi,

Do you have a link to the program we could get? It sounds very interesting and would be great to see it. Thanks!

[mushroom]

  On 5/3/2011 at 7:10 PM, atb913 said:

Hello, my name is Anna and I'm new to this. I have a lot of questions so please be kind!

In 1999, when I was 21, I started having severe hives. My knees, ankles and wrists swelled up, became inflamed and hot, and my hands were so badly swollen I couldn't clench my fist. I passed out in my doctors office due to low pressure, was given a script for prednisone, and sent on my way with a recommendation to see a rheumatologist.

Since that time I have had severe angioedema that seems to be triggered by stress. I now have degenerative disk disease and spinal arthritis. I have fatigue and brain fog so badly that it feels like I constantly have the flu. I hurt every single day of my life, and my angioedema lasts for a month or so once or twice a year. My hair is falling out. I have gut symptoms too, but don't know the trigger, and have been dx'd as IBS.

So, in the past I've been tested for Celiacs (negative, but I don't know what type of test they used), positive for some salicylate reaction, lupus (negative, but that was nearly 12 years ago, it hasn't been revisited), chronic fatigue (inconclusive... my epstein barr was high, but they seemed dismissive).

All the doctors seem to agree that I have an unspecified auto-immune disorder, but they don't know the cause. I can't seem to lose weight to save my life. My joints are falling apart, my bones have lesions, I get constant kidney stones and had to have my gallbladder removed... I feel like an 85 year old woman trapped in a 33 year old.

I have decided to do an elimination diet. I went for about 48 hours without gluten and then broke down and had a biscuit. Lets just say that my stomach was NOT happy. I'm not 100% sure, but it looks like a gluten intolerance at the very least. I think maybe nightshades are a trigger as well as the salicylates.

Life isn't supposed to be this way. I have a 22 month old son that I adore but I'm too exhausted and in too much pain to play with him the way I should. I really don't know what to do anymore. I feel like I've chased so many dead ends, and that I'm starting to look like a hypochondriac. :/

Can any of you relate to this or help in any way? I'm starting to feel desperate.

You are describing a pretty classic intolerance to gluten. The fact that you tested negative for celiac disease does not alter this. You should, IMHO, stop eating gluten immediately. It is killing you.

You did not tell us about the rheumatologist, and are you still taking prednisone? Have you had a bone density scan and had your Vitamin D levels checked?

IBS is a diagnostic label given when the doctor does not know what you have; it is not a real diagnosis, just a description of symptoms. The most probable cause of all your symptoms is gluten. Can you get a new doctor, a real doctor, someone who knows something about celiac and gluten intolerance? If not, please do stop eating gluten. I think you will find immediate relief from most of your symptoms - well, not immediate, some of them take a while to respond, but at least you won't be getting worse.

[atb913]

"You are describing a pretty classic intolerance to gluten. The fact that you tested negative for celiac disease does not alter this. You should, IMHO, stop eating gluten immediately. It is killing you.

You did not tell us about the rheumatologist, and are you still taking prednisone? Have you had a bone density scan and had your Vitamin D levels checked?

IBS is a diagnostic label given when the doctor does not know what you have; it is not a real diagnosis, just a description of symptoms. The most probable cause of all your symptoms is gluten. Can you get a new doctor, a real doctor, someone who knows something about celiac and gluten intolerance? If not, please do stop eating gluten. I think you will find immediate relief from most of your symptoms - well, not immediate, some of them take a while to respond, but at least you won't be getting worse."

I haven't been back to a rheumatologist in years. For a while, it seemed as if the angioedema went into remission. I didn't have any flare ups for close to 4 years (2004-2008) but shortly before becoming pregnant I had a severe case that lasted close to 3 months. I had to postpone my wedding.

Pregnancy seems to have been the kicker though. After giving birth is when the REAL exhaustion kicked in. The first few months I figured it was normal, but he's nearly 2 years old! Makes no sense.

I haven't taken any prednisone since last fall. Again my angioedema kicked up and it started affecting my throat and larynx, so I had to go on a high dosage.

I haven't had a bone density scan, the lesions were diagnosed via x-ray just a couple of months ago. The physician gave me cortisone shots and threw a handful of pain meds and muscle relaxers at me. I hate that crap. I worked in pharmacy for close to 10 years and I do NOT care for taking any sort of medication unless it's absolutely necessary. My PCP did a full bloodwork panel last fall and didn't mention a Vit D deficiency but I didn't personally look at any of my results, so I can't say for sure what he actually looked at.

I did decide to eliminate gluten. It is FREAKING astounding how much different I'm feeling in just a couple of days. I feel like... like my contacts don't have protein on them. Does that make sense? Like, I went outside and I was able to see individual leaves again. I feel like that's such a small, insignificant thing but I don't know how else to describe it.

The last gluten I had was 5/1. In less than 5 days my energy levels are a bit better, my mood has changed, I feel happy, my sugar cravings have virtually disappeared...

I'm still a bit fatigued and I'm still dealing with some pain, but it's better.

Does anybody know how long it takes for the pain issues to cease?

And really, thank you all so much for taking the time to comment.

[atb913]

I developed preeclampsia during my pregnancy and consistently spilled protein. They had to induce me at 37 weeks because my BP was unreal.

Could this be linked to gluten at all?

[mushroom]

I',m glad you are starting to feel better. Everyone heals in their own good time, it is hard to predict how long it will take for you. Pregnancy is often the trigger that puts us over the edge and into full blown gluten intolerance - I don't think gluten necessarily has any effect on pre-eclampsia though.

It might be an idea to get a copy of your blood results from your PCP and look them over. Sometimes you can be in normal range, but so low you are barely normal. You ideally want to be at middle range, especially for things like D and B12.

[deaja]

Like it sounds like with you, it seems like so many dots from childhood are being connected to a possible gluten problem, though I think it must have gotten more severe over the years. From bad excema on my arms from the time I was 8 (hoping it clears up soon!), to anemia off and on from my teenage years, to people thinking I was faking stomach problems.... even just knowing my stomach acted differently than other people's. As far as stomach problems, my mom always would give me dry toast or crackers when I was sick - it wouldn't help. It always worked on my brother, but it never seemed to settle my stomach. It makes sense now.

I feel so much better even just feeling like I have a resolution now. Or at least a possible resolution.

[atb913]

AF started this week. Unlike every other month, I didn't have horrible PMS. My mood stayed somewhat stable, I didn't have insane bloat and my cramps were minimal.

And I've only been gluten-free for a week. I can't believe I'm feeling so much better so quickly. This is crazy!