I Need Help :(

[VydorScope]

At this point I am convinced it is not celiac disease with me (and convinced it IS celiac disease with my son), but I dunno what it could be or where to turn. I feel like I am getting worse with time, and that is cause for concern I think. Here is what I know...

In case it matters, I am a 30 year old native born American "white" male with "Native American", and European ancestors on my Mother’s side, and I am 3rd generation Italian on my Father’s side. I do not smoke at all, not since high school, and only very rarely drink any alcohol. At almost 6 feet tall, and 170 pounds, I am well within “acceptable” weight and size limits. Couple years ago I was 200 pounds, lost the weight with the Atkins Diet. Actually lost too much, down to 155, but got it back up (again using Atkins principles), and work to maintain 165-170 range. Blood pressure was high, but that resolved itself when I lost the wieght.

1. Two Endoscopies, a Colonoscopy, and a Upper GI Barium series were all normal.

2. 1 blood test for celiac disease - neg for celiac disease

3. Iron Deficient Anemia, but only developed in the last few years. No known cause. Currently take Centrum with 100% of RDA for Iron which has keep the numbers in the low normal range.

4. Pain in the lower torso, little below the rib cage right hand side. Area of pain is about 1/2 the size of my hand.

5. Often fatigued, to the point of falling asleep, regardless of how good of rest I have been getting.

6. Very gassy. Belching some times helps with the pain from #4

7. Sometimes get very light headed to the point of nearly passing out. I have never to my knowledge actually passed out.

8. Get tingling in my fingers and toes from time to time.

9. Lips get numb and tingly when I eat oranges; this is the only food reaction I know of.

10. Diagnosed via EEG, MUGA and Echocardiogram with a Left Bundle Branch Block and Low Ejection Fraction on my heart. No current treatment except monitoring for this.

11. Diagnosed separately by a psychiatrist and a psychologist with ADD/ADHD. Not presently medicated for this. Probably unrelated.

12. General feeling of unwellness. Non-specific

13. Lower back pain for as long as I can remember, all joints constantly crack and creak.

14. Suffer from seasonal allegories to the normal stuff, dust, mold, oak, grass, etc. Presently take Zyrtec as needed.

I think that is presently everything I know. Any ideas?

[frenchiemama]

Pernicious anemia? I have no clue, but I do know that the symptoms include anemia and tingling in the extremities.

[Guest nini]

Vincent, you've stated before that when you "cheated" on the gluten-free diet that you had a very bad reaction, am I correct?

Gluten Intolerance could very well be a major part of your problem, causing a lot of other symptoms... You may have other food intolerance's as well that would not show up in reg. allergy testing. Just because your tests were negative for Celiac doesn't mean that you aren't gluten intolerant. Many people are and don't even know it.

I'm not a dr. ( I just play one on the internet ) but I think from your symptoms you need to continue to give the Gluten Free diet a chance as well as keeping a food diary to see what else may be aggravating you.

You describe things (symptoms) consistent with Gluten Intolerance and Candida.

Have you had an ultrasound done of your gall bladder, spleen, kidneys, etc? Have they ruled out gall bladder disease?

Do I think that Gluten is your only problem? NO, but I do think it is part of it...

[VydorScope]

Vincent, you've stated before that when you "cheated" on the gluten-free diet that you had a very bad reaction, am I correct?

Yes.. but I have to say its inconsistent. Some times I have a "bad" reaction, and I will have been eating very good (as in strict diet) for long streteches. I am scheduled for Food Allegry testing on the 25th, I plan tot ask if they can do intolernce testing too.

While I have had bad spikes.. I have just never really gotten better, and I think over all I have been getting worse.

I have not had any spleen, kidney or gallbadder testing... no doc has even metioned that to me. I have had tons of blood tests, I get pages of results back, but I am 867 miles form my files right now, so I can not check them to see if anything like that listed.

Forgot to mention the oddest sympton (I am working a list to bring to my doc next time I see her), sometimes I get the shakes, and get them bad, so bad that I can not hold a drink with out it splashing over. Thats followed by ravenous hunger for a single food like Rasins. Last time I ate 1/2 of the big red can of Sunmaid Rasins before I realized what I was doing.

Candida ... I do not think I have heard of that one. I will have to google it in the AM.

[VydorScope]

Pernicious anemia? I have no clue, but I do know that the symptoms include anemia and tingling in the extremities.

<{POST_SNAPBACK}>

Hmmm not heard fo this one.. will have to look it up inthe AM too...

[Guest nini]

what about your blood sugar levels? Have you been tested for Hypoglycemia?

If you haven't had an ultrasound of your gall bladder and related organs, then I doubt they looked for gall bladder disease, however, several of your symptoms are consistent with gall bladder disease.

Prior to me going completely gluten free, I could go weeks eating gluten and not have a reaction and then something would set me off and I would have a terrible reaction. I believe that gluten is toxic and is causing damage even if you aren't having symptoms... again, not saying it's the ONLY problem, but def. part of the puzzle.

[mstrain]

Hmmm not heard fo this one.. will have to look it up inthe AM too...

<{POST_SNAPBACK}>

I was going to cut and paste the info but there was so much info that sounded pertinent to your symptoms that I figured the link was more useful. Open Original Shared Link

[VydorScope]

I was going to cut and paste the info but there was so much info that sounded pertinent to your symptoms that I figured the link was more useful.  Open Original Shared Link

<{POST_SNAPBACK}>

Thanks thats a greatlink but it does not sound like it fits.

[VydorScope]

what about your blood sugar levels? Have you been tested for Hypoglycemia?

If you haven't had an ultrasound of your gall bladder and related organs, then I doubt they looked for gall bladder disease, however, several of your symptoms are consistent with gall bladder disease.

Prior to me going completely gluten free, I could go weeks eating gluten and not have a reaction and then something would set me off and I would have a terrible reaction. I believe that gluten is toxic and is causing damage even if you aren't having symptoms... again, not saying it's the ONLY problem, but def. part of the puzzle.

<{POST_SNAPBACK}>

WEll, dang it, I wish I was home (for lots of reasons) so I could pull my blood work (I always make them send me a copy of all resutls) and see if hypoglycemia was tested for. After 3 years of test you'd think I could keep track of it all mentaly LOL But that would fit some of the symptons prbly.

As for gluten. Since its just my wife, my celiac disease son, and me... it was easier in our house to just go 100% gluten-free for the entire family. Since the thread about when I delibertly ate some gluten Ive not had any.. and not had any postive change either. Except that one incident its probably been 3-4 months gluten-free now.

Canadia I looked up and that is prbly not it, that would have shown up in the endoscopys and am fiarly sure now tht I read up and refreshed my memory that did test for that and it was not there.

Thanks for the replies...

[VydorScope]

See part of the problem (okay most of it maybe) is that I dont think I ever gave my doc a complete list of symptons... I can never think of everything while I am there... thats why I am working on this list.. I do not think for example I ever mentioned the shakes, or eating episodes... so she prbly would not have tested for hypoglycmia...

[Guest nini]

well, I hope you get it figured out... If I think of anything else to test for I'll let ya know! But def. have your doc look into gall bladder and hypoglycemia...

[Carriefaith]

If you can, get tested for casein intolerance, lactose intolerance, gluten sensitivity/intolerance, and wheat allergy.

[VydorScope]

If you can, get tested for casein intolerance, lactose intolerance, gluten sensitivity/intolerance, and wheat allergy.

<{POST_SNAPBACK}>

Plan to get test for all the food allergies that they can fit on my back. I need fine out how/etc to get tested for the intolernces though. PLan to ask about that.

[Carriefaith]

Yea, the skin prick test will only test for allergies. I am sure that there are tests for the intolerances, I know that there are a few for lactose intolerance. From your symptoms though, I would guess that you may have an inloerance to gluten or casein.

[Rachel--24]

Canadia I looked up and that is prbly not it, that would have shown up in the endoscopys and am fiarly sure now tht I read up and refreshed my memory that did test for that and it was not there.

<{POST_SNAPBACK}>

Thats not exactly true....Candida will not show up in an endoscopy. There is no "definate" test for diagnosing Candida. I doubt you were ever tested for it unless you have an alternative type doctor. Most mainstream doctors don't acknowledge Candida even though its a common problem. An alternative or naturopath (sp?) doctor will dx Candida based on symptoms and possibly a stool analysis. I have gluten intolerance but I think I also have Candida as a result of a stressed out immune system. Anyways...I'll find out in a few days. I'm waiting for test results. Most often candida is dx'd simply from no other cause being found and the results of a questionairre such as this one Open Original Shared Link

-Rachel

[VydorScope]

Thats not exactly true....Candida will not show up in an endoscopy. There is no "definate" test for diagnosing Candida. I doubt you were ever tested for it unless you have an alternative type doctor. Most mainstream doctors don't acknowledge Candida even though its a common problem. An alternative or naturopath (sp?) doctor will dx Candida based on symptoms and possibly a stool analysis. I have gluten intolerance but I think I also have Candida as a result of a stressed out immune system. Anyways...I'll find out in a few days.  I'm waiting for test results. Most often candida is dx'd simply from no other cause being found and the results of a questionairre such as this one Open Original Shared Link

-Rachel

<{POST_SNAPBACK}>

Was I looking at the wrong thing then? NIH says endoscopy is how they test for it....

Open Original Shared Link

[VydorScope]

Yea, the skin prick test will only test for allergies.  I am sure that there are tests for the intolerances, I know that there are a few for lactose intolerance.  From your symptoms though, I would guess that you may have an inloerance to gluten or casein.

<{POST_SNAPBACK}>

I know they can do breath test for fructose, and lactose... dunno about anyothers...

[tarnalberry]

Was I looking at the wrong thing then? NIH says endoscopy is how they test for it....

Open Original Shared Link

<{POST_SNAPBACK}>

There may be a minor misunderstanding between the two, based on my experience with internet discussions of candidia and discussions with doctors about this type of thing. What you saw on the NIH page is *specifically* about a yeast infection that has spread from the mouth to the esophogus. *NOT* anything in the intestinal tract or elsewhere. If you look at what it says even for esophogial candidiasis, it says it only happens in severely immuno-compromised people - particularly patients with AIDS. For the most part, the mainline medical community doesn't accept that there can be an overgrowth of yeast in the body outside of the mouth (in a few circumstances - babies, asthmatics taking large doses of inhaled steroids, and the severely immuno-compromised) and vaginal area, unless it's the type of infection that is so serious as to land you in the hospital. (I kid you not - I've had a doctor tell me that.) Basically, they don't believe in a chronic, low-level, systemic yeast infection. They say there isn't the evidence to support it in the otherwise generally healthy population. (I'm don't have an opinion one way or another yet.)

Not like this helps find a solution, but it might help understand the differences between "official" and "unofficial" sources.

[Guest nini]

I know I was VERY surprised when my medical Dr. told me almost 5 years ago, that I had a systemic overgrowth of candida that was causing a very very painful itchy rash all over my body... This was prior to my dx of Celiac too... so who knows, maybe it was DH and he misdiagnosed me!

[Rachel--24]

Tiffany is right...the doctors simply don't believe that there can be a yeast overgrowth in the intestines or that it can become systemic unless you have a compromised immune system such as an AIDS patient. I have an alternative doctor who believes I have systemic Candida but when I try to discuss this with my "regular" docs I am totally ridiculed. I don't really know what to believe at this point because now I have a diagnosis of gluten intolerance. Maybe this is the real cause of my problems...but then again maybe Candida is contributing. I'll have to wait till I get my test results back. I think I will probably need to treat Candida but it may not be this big *systemic* monster like I once thought.

I don't think you should assume you don't have a problem with gluten because your bloodtest was neg. My blood test for celiac disease was neg. also but My Enterolab results were positive for gluten intolerance. When gluten was a regular part of my diet I had all sorts of aches and pains but I didn't really notice it was coming from what I was eating. Its more obvious now that I'm gluten-free for awhile...I think my body is more sensitive now or I'm just not as sick as I was a few months ago so I can feel it more now. Also sometimes I could eat some pizza and not feel a thing where other times if I ate pizza I would end up in tears...so for whatever reason the reaction is not always the same. This is one of the reasons it took me a few years and lots of dietary changes to figure things out.

[KaitiUSA]

I realize not all doctors believe there is yeast overgrowth in the intestines but to my surprise my doctor was different. Now, the medical doctor ordered a stool test done..they were actually looking for food poisoning because I have had ecoli before. Anyway, what came back was candida and he goes hmm I have not seen that before. Apparently, it was a pretty bad case from what I was told.To make a long story short I was able to get treated for it with Nystatin. A majority of the doctors are nimrods when it comes to it though.

It can occur in the intestines so don't let anyone tell you otherwise. Also, it is possible as mentioned before that you may have a gluten intolerance but not celiac so that could be why testing showed negative. Or, it could be something else completely. Hopefully you get to the bottom of it soon.

[VydorScope]

Hmm does any have a good link on this cananda stuff then?

I wonder... my neighbor back home has one of htem blood test kits... wonder if I can test my self for hyperglicima...

[Kasey'sMom]

I too have suffered from CRC and last summer it started presenting itself in different ways. I started have pain in my lower back in shoting pains in my legs. I had thrush really bad when my dd was a baby and the candida became resistant to Diflucan etc. I came across the Whole Approach system. I've been doing the program for six months and I've had really good sucess. Here's the website.... Open Original Shared Link

They have a forum link at www.wholeapproachforums.com that has tons of information on candida and treatments. You'll also find information on what symptoms can be associated with candida. Whole Approach has an expert that comes online to answer questions and post several times a week. Her name is Tari-Lee and she may be able to answer specifics about your situation. They have a section of the forum that lists recipes that are low glycemic. A lot of the recipes are gluten-free & soy free and all of them are CF. I followed their candida diet very strict for three months but now I'm not at strict with it.

Let me know if you need anymore info. Hope this helps!!!

[Rachel--24]

I got my candida stool test results back today and it was negative for candida, parasites or any other pathogens. That is good news for me....I guess I don't have a systemic monster growing inside of me after all I don't know how reliable these tests are so I'll just go easy on the sugar for awhile and probably continue with Nystatin. Strangely I have no "good" bacteria either. I have to take probiotics for that. Hmmm...wonder what happened to my good guys

Theres a wealth of info out there on candida.

Heres some links:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

[VydorScope]

Welp back in TN and i just had my nieghbor test me with her glucose meter. My fasting level was 115, so that elimates hypoglycmia and diabetes at least.