Help With Symptoms + Results

[DazedAndConfused]

Hi all,

I'm new here so I'm sorry if I'm making any mistakes by asking questions that have already been asked...

I'm a 30 y/o male, and have been having digestive issues for about 7 months.

It started with severe D, and has since progressed to moderate D every morning. I have also developed a bad gas problem, which is just as uncomfortable as it is embrassing. Sometimes I will have cramping and gas within a few minutes of eating.

I have had numerous blood tests and stool tests. The only thing that has been unusual is a low b12 reading (149).

I have been prescribed enough antibiotics to sink a ship - all with no result.

I had a colonoscopy which was all normal and a CT scan with showed mild diverticulosis. My doctor does not belive that the Diverticulosis is the cause of my problems.

My latest symptom is dizziness (similar to being drunk) and my eyes are unable to take in everything - only the focal point (does that make sense?) I am also unable to concentrate for very long.

I am at the point where I will need to start taking time off work. I am exhausted and usually go to bed at 21:00. How ever, I can't sleep and toss and turn for most of the night.

I have been prescribed Questran Lite by my Dr(which has little effect) and a Naturopath has given me probiotics (also with little effect)

I'm miserable, and starting to get depressed....

My partners mother is a Coeliac and she is convinced that I am one too. I have been gluten free for the last few days and my stomach still hurts, but no where near as much. I am also sleeping better too. I still have my morning D.

My genotype test was positive for DQ8, but I think my serology was negative for coeliac.

Can anyone help with interpriting the rest of my results?

Deamidated Gliadin IgA (EIA) 9 units Normal (<20)

Transglutaminase IgA Ab (EIA) 2 units Normal (<20)

Total IgA 1.95 g/L (0.85 - 3.50)

Does this mean that I am definately NOT a Coeliac? Are false negatives common with this type of test?

I'm desperate to find out what is wrong with me.... Help!

[mushroom]

Hello and welcome, DazedAndConfused.. Rest assured you are not making any mistakes by asking questions. If no one asked questions we wouldn't need to be here.

Your celiac blood tests are undoubtedly solidly negative. Your total IgA control test is normal so that validates the other two results, the first of which is very specific for celiac. Does this mean that gluten is not a problem for you? No, unfortunately it does not. There is at least a 25% error rate on the testing. And some people are really not celiac according to today's definition of it; they fall somewhere else on the gluten intolerance scale. Gluten intolerance can cause the same symptoms as celiac and a lot of the same damage, but in order to be classified celiac you have to produce the specific antibodies they are measuring which indicates damage tol the small intestine. Now, annoyingly, ou can still have damage and malabsoprtion in the small intestine and show up negative Some people also show up negative on endoscopy with biopsy, but still have gluten intolerance. There is a lot of research getting under way as to the difference between the two - doctors used not to believe in NCGI but now even Dr. Fasano, the god of celiac, is admitting they got it wrong and that such a condition does exist. There is, however, no test for it.

You have already noted some improvement with gluten absent. I bet you will continue to improve in the absence of gluten, and will start to sleep better. You are positive for DQ8 which is one of the main predisposing genes. I believe you should consider yourself gluten intolerant at the leasst. if not celiac, and strictly follow the glutlen free diet. With a low B12 reading you should also start taking a sublingual B12 (methylcobalamin) supplement to bring your levels up, because low B12 can lead to osteopenia and osteoporosis.

Fire away with any other questions you may have and good luck on tetting ride of alll those nasty symptoms.

[DazedAndConfused]

Thanks Mushroom

Any advice as to what I should do next? Should I ask for more tests? If so which ones?

I'm having b12 injections every 3 weeks at the moment - but haven't noticed any difference.

I'd do anything to feel "normal" gain.

Sigh.

[Bubba's Mom]

Some Dr.s will do an endoscope to look for damage in the small intestine even if your bloodwork is negative, but you have to be eating gluten for it to show any damage. See if your Dr. will do one, if you think it would help alieve your anxiety about not knowing what's going on?

My blood tests were negative, which happens in 20-30% of us. I was given the endoscope and was told I had severe villi flattening.

Your low B12, along with your symptoms point towards Celiac, but at the very least you could be gluten intolerant?

See if you will be getting a scope, and if not..go completely gluten-free.

[Kamma]

Morning, dazedandconfused:

Currently, the ttg testing is only used for the intestinal form (ttg2) of Celiac. The celiac tests for the clinical presentations of DP (ttg3) and Neurological (ttg6) are still being developed. If you present primarily with one of these two, the ttg2 might not pick it up.

"Blood tests

Research has shown that some people with coeliac disease who do not have obvious gut symptoms may not produce antibodies for transglutaminase-2 (TG2), the antibodies used for screening purposes in coeliac disease. Antibodies for transglutaminase-3 (TG3) have been found in people with dermatitis herpetiformis and antibodies for transglutaminase-6 (TG6) have been found in people with neurological manifestations. However, tests for TG3 and TG6 antibodies are currently not widely available."

continued here: Open Original Shared Link

I presented primarilly with the neurological aspects of celiac: falling over, vertigo, drunken walking, foggy, lethargic and so on. I've been off gluten, after doing the challenge, for six weeks now. The fogginess is lifted, the vertigo has lessenend and my energy is returning.

At this point, don't listen to the tests - listen to your body. Take yourself off gluten and see if your symptoms gradually fade away. That's the best way to do it.

Good luck and keep us posted. I spent two years with the vertigo, fatigue and falling over. It's no fun and I totally understand your desperation to be healthy.

[DazedAndConfused]

Thanks everyone

I'm definitely not having the same stomach cramps since going gluten free, and I'm sleeping better.

I woke up this morning and felt reasonably rested for the first time in months!

The night of my first post was bad - something in my dinner did not agree with me. It was only rice, chicken, onions, garlic, fish sauce, brown sugar and (gluten free) soy sauce. Do any of those sound suspect?

My most worrisome symptom at the moment is the dizziness and the problems with my eyes. My GP thinks it is because of low blood pressure and told me to eat salt. I have had loads of it in the last few days, but it doesn't seem to make any difference. Any suggestions?

I also wanted to ask: the serology test in my first post was back in August 2011, about 6 weeks after I initially stared to feel sick. Do you think that it is time for another one? Could the result have been negative in the early days and positive now 6 months later?

Thanks again

[mushroom]

Yes, there is some belief that the development of celiac disease is a continuum, and that those who have tested negative in the past could test positive in the pesent or future.There is so little known about the process at the moment. As Kamma says, they have not yet developed testing for the non-intestinal forms of gluten intolerance/celiac disease. They are not sure even if they are two different processes or different versions of the same thing. Tlhe neurological issues seem to take longer to clear than the GI

So your options as I see them:

1. Ask them to repeat the testing

2. Ask them to do the endoscopy with biopsy (many have positive biopsies but negative blood work), but since your symptoms are primarily (it seems) neurological, this may well be negative too;

3. Have testing done through Enterolab (odered online) when they test your stool IgA levels, your fat absorption, any intolerlance for casein, corn, soy, and your genetic predisposition to develop celiac disease (not a definitive test but gives some information)

4. Continue eating gluten free and hope to be recovered within a year.

If you want repeat blood work or endoscopy you should go back on gluten until all testing is finished othrwise the results may be invalid (antibodies fade and intestinal healing takes place).

So, I guess it is decision time

[ravenwoodglass]

You have gotten some good advice already. I just want to add that since you have gone gluten free and seen some improvement that if you do decide to get more testing done do go back on gluten right away and stay on it for a bit before testing to reduce you chances of a false negative. If when you add gluten back in your symptoms become markedly worse that is pretty diagnostic in itself.

[Darn210]

Lots of good info so far. I just wanted to add . . .

The night of my first post was bad - something in my dinner did not agree with me. It was only rice, chicken, onions, garlic, fish sauce, brown sugar and (gluten free) soy sauce. Do any of those sound suspect?

Gluten doesn't have to come from your main ingredients . . . condiments/butter that had been used prior to going gluten free can become contaminated with bread crumbs. Wooden cutting boards or wooden spoons, colanders, scratched teflon pans, etc that were used for gluten items in the past can harbor enough gluten to cross contaminate your gluten free meal.

That being said, in the beginning of the diet, there are often times when a perfectly good gluten free meal seems to cause a reaction. The gut is still healing and anything may have caused an upset digestive system including (but not limited to) eating rich foods, spicy foods, too much food . . . sometimes, just . . . food. It can be frustrating in the beginning. I call it chasing ghosts. You frantically look for what got you and can't find anything. You still need to be diligent and verify that your ingredients and food prep were safe, but you need to realize that this may happen for a while until the gut has healed.

Don't forget to check that your meds and supplements are also gluten free.

Welcome to the board!

[Kamma]

Thanks everyone

The night of my first post was bad - something in my dinner did not agree with me. It was only rice, chicken, onions, garlic, fish sauce, brown sugar and (gluten free) soy sauce. Do any of those sound suspect?

Fish sauce and soy sauce bring on my symptoms even if they list no gluten containing products. Might be cross contamination. I can't even have ketchup as it does the same thing: no gluten but made on production lines that include processing gluten containing foods. Skylark mentioned the other night that the neuro folk (neurological manifestation of celiac) seem to be more sensitive to cross contamination. Her suggestion was to watch how you react to any processed foods and maybe stay away from them for at least awhile.

[Korwyn]

I have a huge cross-presentation of some of my neuro symptoms (insomnia, panic attacks/anxiety, tachycardia, hot-flashes, widespread muscle fasciculation) with soy. I can't even ingest soy lecithin. Just an observation. Also as some said you my just be sensitive to a variety of things for the time being depending on your physiology and may have to avoid certain foods. For whatever reason I was very sensitive to anything containing capsaicin for a long time. Now I can eat them infrequently in moderation with no issues.

You may want to start a very basic elimination diet and a food journal. It actually helped me a lot to revert back to unprocessed foods for a couple of months and then start adding one food at a time back into my diet while journaling my responses. But remember if you do this that one bad reaction doesn't necessarily mean "OH HEAVENS, I CAN'T EAT _____"! Sometime your just going to have a bad day. It doesn't mean you got gluten, or that you can't eat that food, it just means your body is being cranky. Happens a lot during the healing process. Just back off for a few days, relax, and try that food again later.

[DazedAndConfused]

Thanks everyone for all the great advice.

I haven't had any stomach cramps, bloating or gas since going gluten free - so that

[ravenwoodglass]

And now some more questions:

With regard to the blood test, can it be negative and then later change to positive if you develop Coeliac disease? Or would it be positive from birth even if you had no symptoms?

I know that false negative blood work is common, but is it common to have an endoscopy done with negative blood work?

Thanks again.

Yes a blood test can be negative and then go to positive. There are times when a doctor will endo without positive bloods. Talk to your doctor about it. However you need to be eating gluten for any celiac associated testing. So if you are going to get more testing done do go back on gluten. There is a good chance your body is going to really not like it when you do if you are someone who needs the diet.