All Is Clear! Amazing!

[anonymical7]

Wow, three weeks ago I started the south beach diet and within 5 days I started feeling different, internal bleeding stopped, IBS stopped, heartburn disapeared, I had more energy, and most interesting it is as if I can even see farther. Before it was like living in a fog. Even my ADD seems to be better when I am off wheat products.

However this weekend I tried some Rye Bread and I have been knocked out again for two days, all if it has started to come back. I thought I was allergic only to wheat, but apparently its all gluten.

The exhaustion was the most devastating thing for me. As an artist I would have to save up my energy when teaching or working in the studio, 2-3 hours of work and then crash. It was a fluke that my wife urged me to try the south beach diet, and we totally discovered this by accident.

I just wanted to write and tell those people who are stubborn to pursue this, that this is very real. I get people who roll their eyes when I tell them. But I have twice the energy that I used to have, well, not at this moment, I am layed out now recovering from the Rye....

new here...

newbie

[Lisa]

Welcome! Before you begin the diet, in earnest, you might want to be tested. You should remain on a gluten diet for the optimum in accuracy. This is what to request from your doctor:

Antigliadin antibodies (AGA) both IrA and IgG

Antiendomysial antibodies (EMA) - IgA

Anti-tissue transglutaminase antibodies (tTG) - IgA

Total IgA level.

[anonymical7]

Thanks, but im afraid now to go back since I had such a bad reaction to trying Rye. Is it really worth getting exposed again?

[Lisa]

Thanks, but im afraid now to go back since I had such a bad reaction to trying Rye. Is it really worth getting exposed again?

That is always a personal choice you should balance, given the fact that should you have Celiac Disease, this diet is for life.

I woud urge you to see a doctor. Internal bleeding is not something to take lightly.

[skymgirl]

That is always a personal choice you should balance, given the fact that should you have Celiac Disease, this diet is for life.

I woud urge you to see a doctor. Internal bleeding is not something to take lightly.

Agreed - especially about the internal bleeding. I might sound silly, but how do you know it's stopped if it's internal?

It's great that you've found a diet that is making you feel better, and testing can be frustrating, but I tend to think it's better to be cautious and rule other things out. (My own personal story - I was pretty sure I was Celiac, but Crohn's Disease was a surprise diagnosis that I might not have known about had I gone gluten-free on my own. The Crohn's is mild for me, and I'm happy to have started treatment that should keep it that way.) You can always go back to the diet after you've been tested, no matter what the results are, but you should weigh the risk of not having other possible conditions ruled out.

Good luck to you, whatever you decide to do.

[anonymical7]

Well I say internal but it was some more bleeding from...well the end. I will see about a doctor again. I did see one several years ago and had a colonoscopy but they said I was fine. But they did say it might be an allergy. I dont know why they did not do any blood work. Yeah, I just feel so much better and do not have the problems I had before. I'll see about the doctor... I was screeened for Chrones though, and came up okay.

[skymgirl]

Well I say internal but it was some more bleeding from...well the end. I will see about a doctor again. I did see one several years ago and had a colonoscopy but they said I was fine. But they did say it might be an allergy. I dont know why they did not do any blood work. Yeah, I just feel so much better and do not have the problems I had before. I'll see about the doctor... I was screeened for Chrones though, and came up okay.

Any bleeding from "there" can be scary, so it's a good idea to get it checked.

Hope you didn't think I was trying to scare you and say you might have Crohn's, I was just saying that I was surprised when I was diagnosed with it and hadn't expected it, which is why I'm happy I went the medical route and got tested, rather then just went gluten-free on my own. I tend to encourage people to go through the doctor just to make sure other things are ruled out, and since you don't need a prescription to go gluten-free you can always go that route no matter what the tests say. The end result is to just get yourself feeling well!

[chasbari]

Wow, three weeks ago I started the south beach diet and within 5 days I started feeling different, internal bleeding stopped, IBS stopped, heartburn disapeared, I had more energy, and most interesting it is as if I can even see farther. Before it was like living in a fog. Even my ADD seems to be better when I am off wheat products.

However this weekend I tried some Rye Bread and I have been knocked out again for two days, all if it has started to come back. I thought I was allergic only to wheat, but apparently its all gluten.

The exhaustion was the most devastating thing for me. As an artist I would have to save up my energy when teaching or working in the studio, 2-3 hours of work and then crash. It was a fluke that my wife urged me to try the south beach diet, and we totally discovered this by accident.

I just wanted to write and tell those people who are stubborn to pursue this, that this is very real. I get people who roll their eyes when I tell them. But I have twice the energy that I used to have, well, not at this moment, I am layed out now recovering from the Rye....

new here...

newbie

I can share much of your story as I could barely make it through teaching a half hour lesson at a time back in November. Against all advice I went off glutens. I really felt I had no choice. I was dying and could barely move or function any more. I was willing to live with the consequences should I not have been able to get a proper diagnosis. I understand how the glutens are necessary for the blood test and how many doctors refuse to do anything more if you test negative. Fortunately, in my case, I had been able to put together such a convincing history that even when the blood tests all turned out negative my doctor ( a good one) felt it necessary to go ahead with the EGD upper and lower scope anyway which was very conclusive for celiac. Knowing how severe my problems were and how quickly my rheumatoid arthritis, vision problems, heart palpitations, leaky gut, blood sugar regulation, kidney problems, GERD and strength improved I am not sure I understand the whole suicidal notion of needing to undergo a gluten challenge. Yes, I know, it is necessary for the blood test which most doctors seem to use as their point of entry into further examination but if it takes one to two years for the gut to heal, if it will heal properly, and if the endoscopic biopsy is truly considered the gold standard (even though it is possible, even after positive blood tests to miss damaged sections) I am wondering why continue to insist on the insane risk of a gluten challenge. So someone goes on a fad diet like South Beach or Paleo (which has been my saving grace at this point in my healing process) where else would a surgeon or doctor say, "well, looks like the anterior cruciate is better than 2/3 torn through, lets see if we can exert an overload on the tendon just in case it really doesn't need repaired.." Yes, I know that the injury is more apparent and my example might be a bit absurd but..... Here is a good example of someone who has gotten immediate relief from dietary change... a change that is healthful and not harmful and it seems like everyone says "gluten challenge" I say educate the doctors who don't understand. I know that Dr. Greene even recommends it. Once we ruled out the lung and abdominal anomalies that appeared on the original thoracic imaging I was good to go with my decision regardless of what the diagnosis was because for the first time in a decade I finally felt like I wasn't one step closer to the grave every day. No way would I ever have subjected myself to a gluten challenge. I know it might appear easy to say this in hindsight... but... I made that decision before I ever got my completely corroborated medical diagnosis. The diagnosis just makes it easier for others around me to accept why I have to do this.

[anonymical7]

Thanks for the supportive reply. You know there was a period 7 years ago where I lost 25lbs in like 6 weeks, I had heart palpatations as well. I was checked out and they could not find anything wrong with me at the time. But again they had not done any bloodtests, just heart monitoring and although they saw it, they thought it must be somehow generated by stress, which looking back could not have been the case...anyhow, yeah I understand the need for correct diagnosis, but at this stage, I equate it to eat this feel like I am run over by a truck- avoid that and feel like I am normal and energetic! I did just tell my brothers to get tested because they have some of the same symptoms I do.

Is this ever misdiagnosed as Chrons Disease? I ask because my father is diagnosed with it, which is why i had endoscopy when I had problems before, but I again that was negative. I always secretly suspected that it had more to do with something else because doctors never really found a way to keep it on the mend with him However, recently he went on a special diet about a year ago that was avoiding simple sugars and flours due to his diabetes, and they said his Chrons disapeared. Anyhow, interesting...

I will avoid the stuff that makes me feel like the walking dead and my wife feel like she has to take me around on a stretcher.

[ravenwoodglass]

yeah I understand the need for correct diagnosis, but at this stage, I equate it to eat this feel like I am run over by a truck- avoid that and feel like I am normal and energetic! I did just tell my brothers to get tested because they have some of the same symptoms I do.

Is this ever misdiagnosed as Chrons Disease? I ask because my father is diagnosed with it, which is why i had endoscopy when I had problems before, but I again that was negative. I always secretly suspected that it had more to do with something else because doctors never really found a way to keep it on the mend with him However, recently he went on a special diet about a year ago that was avoiding simple sugars and flours due to his diabetes, and they said his Chrons disapeared. Anyhow, interesting...

I will avoid the stuff that makes me feel like the walking dead and my wife feel like she has to take me around on a stretcher.

IMHO you have found the answer. When folks have eliminated gluten and seen an astounding resolution of problems you have the answer to whether you need to be gluten free or not. If a gluten challenge causes return of those symptoms to the extent where the person is made extremely ill for months for a blood test or biopsy that may be a false negative even after all the months of suffering for the sake of a test makes no sense to me UNLESS it is the only way the person will stick to the diet.

There are some doctors who would consider your resolution of symptoms and your reaction to the challenge you have done diagnostic in itself.

It is your choice whether to challenge again for longer or not.

I was one of the unfortunate ones who do not show up on blood work. My symptoms at the end were Chrons symptoms, according to my GI. So instead of doing an endo when I first saw him he only did a colonoscopy and pronounced me fine and told me I had IBS. A few years later after much additional damage was done my allergist finally had me do an elimination diet which clearly showed a reaction when I added back in wheat. When that was positive on a short one week challenge I was sent back to the GI for confirmation of celiac. I was put on another gluten challenge for the testing and had such a severe return of symptoms that when the day came for the endo I was laying on the bathroom floor bleeding from my butt. I got my doctor determined diagnosis but at a great cost.

If symptoms do not resolve or others crop up on the diet you do have the option of other testing. Being gluten free will not effect the testing for anything other than celiac and if you do have other issues besides gluten they can be found. I would go with your 'gut' instinct and continue healing.

[chasbari]

An unfortunate addendum to my original post. This morning I find myself wiped out from my first definitive accidental glutening since beginning gluten-free in November. I had some episodes that I thought were CC or something that ended up either being leaky gut reactions to corn, soy or too much physical work too close to eating. Once I went on paleo I have not had any real incidences involving anything other than the overworking symptoms.... until last night. My wife and family have been extremely cautious and helpful in avoiding any CC issues as we have to share the kitchen and with a houseful of hungry kids, college age to grade school, it can get crowded in our tiny kitchen. Well, my wife will cook a roast or chicken and set aside some portion for me that never comes in contact with anything that might cause CC. She had a few pork chops cooking all day yesterday and when they were done I helped myself to a small piece as I have been ridiculously hungry for the last week and have been grazing all day every day and still can't keep the hunger away. We had gotten the chops as part of a add on box from Angel Food Cupboard that we were trying out for my elderly parents as they have pre-prepared portion control meals that my dad can heat up for the two of them as my mom isn't able to make her way around the kitchen any longer. We had read the labels on the steak and the chops and I had noticed something added to the pork chops that made me wary of them. Long story short... both my wife and I forgot about that as we had put them in the freezer after repackaging them. It wasn't until after I was doubled over in excruciating pain about 20 minutes after that small piece that we both remembered about the suspect additives and also realized that those were the pork chops she had cooked. I got chills, extreme cramps and, if I had a Sharpie marker I could have slowly traced the exact path of my small intestine on my belly for the next few hours. I had to cancel all my evening lessons and was ready to go to the hospital. I normally have a high pain tolerance but this was unlike anything I had encountered thus far since going gluten-free. Much different than the dull bloated pain I had been living with for decades before going gluten-free. I am very tired this morning, I have a dull ache in my gut and my rheumatoid arthritis is the worst it has been for some time. My upper back and neck are a mess and I didn't sleep well last night. Just wanted to let you know I now know experentially what I was hypothesizing about yesterday... no interest in experiencing THAT again.

[anonymical7]

update, it seems I started something across my family. One brother who suffered the same symptoms, with bleeding, dark circles under his eyes, extreme fatigue, depression, also eczema and other things tried going off wheat for 3 days and some of the symptoms stopped. He was convinced enough to get tested, hes a bit more skeptical and loves junk food so he is just going to get a blood test. That will happen in a couple weeks.

I'll be curious to hear his results to see if this runs in the family. Its a bit eerie, its the first time we talked about our health (typical men) and he mentioned all sorts of other things that we had identical. His symptoms seem far worse, his eczema is far worse. I had just a bit here and there, but his was getting worse. However I live in the EU and eat pretty healthy anyhow before I figured out I was positive for celiac symptoms. He on the other hand lives in the U.S. and loves loves loves junk food which is loaded with glutens.

Anyhow, i am still so amazed! I had some soy sauce today and felt a little under the weather. I looked at the ingredients, sure enough, wheat....Im going to be more vigilant.