Negative Results But Responded To gluten-free Diet

[MrRoper]

Hi Everyone,

I was hoping to get some advice or other experiences from members who might have gone through something similar to myself.

I`m a 35 year old male whose symptoms started 5 years ago. They started with a sudden onset of abdominal discomfort on the left hand side and a change to my bowel movements. the discomfort is constant and stops me from laying on my back due to the pain. My bowel movements seem to alternate between constipation and then a number of loose movements, then back to constipation.

Other symptoms include

• 
  
  
• Fatigue
  
• Hair-loss
  
• Strange tingling / twitching in legs (legs feel wet at times)
  
• severe weight loss (at least 2st)
  
• loss of appetite
  
• pain behind the eyes
  
• feeling of general malaise (This is really hard to explain, but i just dont feel 'well')
  

I have lots of other symptoms but these are the main ones. I have had some pretty intensive testing done including

• 
  
  
• Colonoscopy
  
• Upper Endoscopy
  
• CT Scan
  
• Various Blood tests
  

All these have been negative including a celiac blood test and biopsy.

I have officially been diagnosed with IBS and told that I have depression / anxiety. Why do doctors not understand that I am depressed because I feel ill, and not the other way around!

My life is pretty much none existent currently, as i am too tired to do anything apart from work and now fear food rather than enjoy it I have tried lots of different supplements, cures and even done things that as a "scientific" person I would laugh at if someone else has told me they had tried it.

My latest attempt for a cure was to a) try a 'anti-candida' probiotic (specifically thre-lac), an L-Glutamine supplement and also go gluten free. I started this about 2 months ago.

Strangely enough I have felt better, not perfect but my hunger has been returning (actually feeling my first hunger pang for about 4 years) and also my stools have returned to some normality. The fatigue and other symptoms were unchanged but otherwise i felt allot better. About a week ago I went back on wheat and within 2 days my symptoms had started returning.

The best way I can explain it is that it feels like my digestive system has slowed down or stopped!

So some questions finally!

• 
  
  
• Do these symptoms run in-line with Celiac / or an intolerance?
  
• Is the fact that my biopsy was negative conclusive?
  
• Would you expect such a change in symptoms with IBS?
  
• are the other symptoms due to mild deficiencies
  
• Is this all in my head?
  

Im sure im missing something out but this will do for now!

Sorry if I have gone on a bit, and thankyou in advance

Chris

[Wolicki]

Hi Chris. One thing important to know is that blood tests and/or biopsy can be inconclusive and yield false negatives. You could have celiac, or you could be gluten intolerant. Either way, the fix is a lifelong gluten free diet. Since you have responded positively to the diet, I would continue. You have to remember that you were not feeling well for 5 years, and all the symptoms may not go away immediately. I felt immediately better, but did not feel 100% for nearly a year. I had been ill for 10 years.

You may want to keep a food diary to determine if you continue to not feel well. This can frequently be caused by secondary food intolerances, which for many people resolve themselves. I started out with over 50 foods that made me feel awful. Now, only 3.

Hang in there, it gets better. Take a good multivitamin (call the manufacturer unless it is clearly labeled gluten free). Ask your doc if he is willing to run a full nutritional panel. Many of us benefit from extra iron, calcium and vitamin D.

No, it's not all in your head, and I don't think IBS would improve. My personal theory is that many who have been diagnosed with fybromyalgia, IBS are acutally celiac or gluten intolerant.

Be well,

Janie

[FooGirlsMom]

Hi there,

You sound like me when I started searching for the answers to my health problems some years back. I, too, had Candida as one of the symptoms. One of the things I wanted to mention to you is that you are not going to feel stellar immediately, even if you are doing everything right, if Candida is part of your problem. I had to go through about 6 months of yeast "die-off" where I would feel great for a week, then I'd go back to feeling like I had the flu for a couple of days or 3 or 4. But each time I felt good, it would last longer, until finally there came all good days.

I don't know how much research you've done on Candida but going on a gluten-free, dairy-free & sugar free diet is a must. Sugar feeds yeast. Think of how bread is made. In my case, the only way I could get well fairly quickly was to go "whole-hog" and do it low carb. I too took probiotics, only ate lemons & limes, (my favorite was squeezing them into water or carbonated water with stevia liquid for a sweet drink). This type of diet will speed the symptoms but it will get you well faster too. Think of it as boot camp

I hope you feel better soon. I had all kinds of issues back in the Candida days. Hormone problems, chronic fatigue, feelings of having the flu all the time. I used to say I felt like I was 100 years old. Walking felt like I had weights on my shoulders.

It's a terrible thing what gluten can do to you if you are intolerant to it.

Hope that helps,

FooGirlsMom

[cassP]

CHRIS!!!

yes- ok, in my honest opinion, i would guess that u have AT LEAST Gluten Intolerance (perhaps Celiac), possibly a B12 deficiency (tingling in limbs), and possibly a Hypothyroid (pain behind the eyes, hair falling out).

we've all had many of your symptoms & they're so classic for what im guessing you could have.

1st off- there's a 20% false negative rate for blood tests. also look at your tests themselves- if you see mine-> one was negative, one positive, and one WEAK positive.... at a quick glance my docs kind of wrote me off but told me to avoid gluten when in fact i actually do have celiac.

also- if the doc did not take biopsies (several in different areas ) of your small intestine- then that could be another false negative.

i also think you should get your vit. b12 levels checked- and LOOK at your results yourself- the range is something like 200-900.... even if you're 200 something (within range)- you could still be suffering from peripheal neuropathy! you may need B12 shots or supplements.

and please get your thyroid checked- it's SO common with Gluten Intolerance.... and actually quite common in general- and PUSH FOR THIS TEST- because i would guess docs usually think this is more of a female problem which is true- but men DO get thyroid issues too.

GOOD LUCK! always get a copy of your results and dont stop till you get answers.... and in the end- if you feel better on the diet than do it

[MrRoper]

Many thanks for the replies girls and guys,

To answer a few of the questions/comments in them

I have had a few thyroid tests done including a full Thyroid panel (including antibodies) as I was sure this was the cause but they have all been negative.

Another symptom I forgot to mention is chronic hives, that appeared after about a year of symptoms. These where bad enough to have me at the doctors having a steroid injection. these continued for about 2 years but seem under control now although I do get them sometimes.

I dont know where the biopsy was taken from, but it was marked as all clear.

My Iron and B-12 are good although I am supplementing my b-12 with a sublingual.

Two things have shown up in my tests but I have been told they are not something to worry about

• 
  
  
• A hematoma in my liver (benign blood clot/tumor)
  
• a polyp which was removed
  

the twitching leg, pins and needles is a new symptom that started about 6 months ago and again is everyday.

I have researched leaky gut, candida etc but here in the uk its not really medically accepted so my doctors have brushed it off.

It really feels like my digestion is impared or has slowed down. I can eat a normal sized lunch and still feel full 5 hours later. I can also still taste the food if i burp etc.

My diet now is basically a piece of meat with veg and potatoes and maybe a rice dish for lunch. My concern with doing a cleanse is that I dont have enough meat on my bones left to support a fast. I have gone from a healthy 11st

to about 9 1/2. I accept that I have spent a lot of the last few years just not eating, maybe having a small lunch and that this just isnt enough calories to maintain weight but it made me feel 'better'.

Its hard as no-one takes this seriously, my family brush it off as i look 'healthy' and my doctors think its all in my head. Part of me thinks maybe it is and im going mad but going from a care free 30 year old to a useless wreck in 4 years scares me in all honesty! My doctors have said that the weight loss is concerning but it seems that because my tests are clear (which i admit is a good sign) its pshycho-sematic.

I appologise if this comes across as a bit of a moan, in a way it is as I have no one that understands what i am feeling, but that is not the intention. Im just looking for ideas and help from people that have experienced similar ordeals

[Ox on the Roof]

I just wanted to add that your symptoms sound very familiar to mine. I got sick in May 2009 and progressively grew worse until I had dropped about 20 lbs. (my nickname was ALREADY Skinny Jenny!) and couldn't even care for my kids. Even if your B12 is under 300, it can make you feel awful. For me, my B12 was 293 and my vitamin D was in the teens. Getting these two levels elevated (B12 injections and mega-doses of D) helped with the hair and neuro symptoms after about a month.

I still have gastro problems, so I started a gluten-free diet on Thanksgiving. I am seeing some improvement.

Hang in there!

Edited to add:

The doctors had me thinking it was in my head, too. After a while, I thought maybe THIS is what crazy FEELS like. They bounced me off of about six different anti-anxiety and anti-depressants, which made me feel even worse. I finally decided I'd get nowhere until I did what they said, so I stuck it out on Lexapro for six months. It did nothing to help and I felt better after I came off of it. You are not crazy.

[GFinDC]

Many thanks for the replies girls and guys,

...

My diet now is basically a piece of meat with veg and potatoes and maybe a rice dish for lunch. My concern with doing a cleanse is that I don't have enough meat on my bones left to support a fast. I have gone from a healthy 11st

to about 9 1/2. I accept that I have spent a lot of the last few years just not eating, maybe having a small lunch and that this just isn't enough calories to maintain weight but it made me feel 'better'.

Its hard as no-one takes this seriously, my family brush it off as i look 'healthy' and my doctors think its all in my head. Part of me thinks maybe it is and im going mad but going from a care free 30 year old to a useless wreck in 4 years scares me in all honesty! My doctors have said that the weight loss is concerning but it seems that because my tests are clear (which i admit is a good sign) its pshycho-sematic.

I apologize if this comes across as a bit of a moan, in a way it is as I have no one that understands what i am feeling, but that is not the intention. I'm just looking for ideas and help from people that have experienced similar ordeals

Hi Chris,

Moans/rants are perfectly alright around here. We all have symptoms now and then that are not fun. Regarding the testing, there are some people who are IGA deficient, and for them the Iga antibody tests are always negative. That doesn't mean they don't have celiac though. On top of that, the tests are not 100% accurate to begin with, and false negatives do occur even with people who have normal Iga levels. Endoscopy can also result in false negatives.

But it sounds like you already know you have a problem with gluten. Your symptoms sound like celiac to me, if that is any help. Starting out eh diet with whole foods rather than processed foods is a good way to go. IT takes a while to learn to avoid gluten ingredients in foods. Also, even processed gluten-free foods can have some amount of gluten in them as the standards do not require 100% absence of gluten, just less than a certain amount.

Anyhow, Merry Christmas and Happy New gluten-free diet!

[mushroom]

I would classify you as definitely gluten intolerant. Celiac disease is one manifestation of gluten intolerance that can be tested for by the celiac blood panel and by biopsy of the small intestine. My own version of gluten intolerance is that it takes other forms producing different antibodies depending on what part of the body it attacks, so the celiac testing for you may always be negative because they have not yet devised a test for the type of intolerance you have. We have hundreds of posters on this board who tested negative on all tests and yet responded 100% to the gluten free diet. So they are missing part of the puzzle somewhere.

If gluten free makes you feel better, that's the way to go. And my doctors did not believe in candida when I had it either, but that was in the 90's. I found an alternative doctor who diagnosed and treated me, and told my GP about it. She said, "He doesn't sound like a mainstream doctor to me:" I assured her that thank goodness he was not . I thought all MD's knew better by now. Are you stuck with this doctor? or can you find a better informed one? so that you can possibly get a diagnosis and treatment for candida (if that is what it is). There is testing available for it (best diagnosed through a stool test).