Husband Tested Positive For Anti Gliadin Iga On "old Test" And No One Cares. Need Advice!

[Bookmom]

My husband has been having neurological and muscular symptoms along with some other odd random symptoms such as mouth sores for at least the past year.  The peripheral neuropathy and muscular weakness has gotten worse recently.  He has a history of anxiety and has just not felt generally well for the last few years.  We are constantly doing our own research because everything we bring up to our family dr. he tells my husband it is anxiety.  We recently forced him to give my husband the celiac sprue panel.  He tested positive for only the anti gliadin IgA.  Our doctor did not care and said he does not have any problems in this area.  That it was not enough of a "positive test".  He did refer us to a neurologist, since that is the most concerning symptoms my husband has at the moment.  He is only 40 and this is really affective our lives.  Our children are afraid that something is really wrong with their father.  I have been reading the other forum comments to figure something out.  But I decided I would try writing my one post to see if anyone can give us any help with his results.  

 

We also started doing the gluten free diet about 10 days ago.  My husband has had even more problems the last few days. Is this normal and how long does it actually take to start to feel better.  Again he has neurological/muscular symptoms not gastro in nature.  I have heard that gastro symptoms clear up fast.

 

Worried wife.....

[Takala]

Okay, look, the "neuro" people tend to have a much more difficult time getting diagnosed. The next step would be an endoscopy biopsy of the small intestine, a biopsy of the skin next to any rashes. Do not go gluten free until you get it.  There is a LOT of bad information being put out on the internet by social media concerning diagnostic procedures.  Going off gluten, the body stops producing the antibodies to cause the intestinal damage.  There is a major celiac center foundation website in the middle of the country, which has a twitter feed, where I recently saw the person who runs that twitter feed claim that only 2 weeks of gluten consumption is necessary for a positive biopsy.  I do not know why someone would do this, other than they are not getting proper oversight, but it is not the first time I have seen very "iffy" information put there.  This celiac diagnostic center foundation also claims that if one does not have a positive biopsy that one just does not have celiac, and the biopsy is the only way to officially diagnose. 

 

No one mentions brain damage visible on a scan except a few of the cutting edge researchers, so I will.  But the "diagnosis" chain needs to be followed properly.  If you have decent insurance and a decent doctor you can still get tested for more than one thing and have different body parts examined during the same time frame. 

 

The neuro doc might be clueless as well as to the celiac symptoms,  and you really have to be both very bright and very obnoxious and persistent with your patient advocacy or you are then in more diagnostic wasteland.   You can either raise heck with this original primary care doctor via various methods of his not performing his diagnostic duties, including contacting your state medical board, the insurance company, and legal help if need be, or you can attempt to switch doctors. Remember, everybody has a boss or an oversight committee and they like to belong to various hospital boards or they don't get to practice.   SOMEBODY has to get you and your husband to a gastro doc, and do it however you have to, even if that means you start calling gastro docs and asking how you can get your husband in to see them.  Then, if the gastro doc still says, no, I don't see any reason to test, you can take it from there. 

 

You may still not get the "positive diagnoses" via biopsy of the intestine, but at least you won't get in trouble for not attempting to do so because your primary doctor is a screw up.  Then they feel better about looking at other body parts to explain the neurological symptoms. 

 

If indeed this is a "gluten problem" which is causing the neurological problems, 10 days is not much on the gluten free diet to resolve years of antibody damage.  There is a learning curve that goes along with becoming gluten free enough to start healing, cross contamination "happens" in spite of the best intentions, plus it can take months for antibody levels to drop enough so the the body stops attacking its own tissues, so ongoing symptoms are not going to go away quickly, just like a broken bone doesn't heal up in 10 days.  My experience was that I got almost immediately a bit calmer and more focused, so I quickly could tell that I was on the right track once I stopped eating grains, but I wasn't on any medications (other than a bit of over the counter ibuprofen)  so I was very much in tune with my reactions.  And I stopped having a lot of infections. My kidney function suddenly got a lot better, as did my arthritis inflammation.  I think the sudden lack of being sick all the time impressed my primary care doctor that if I wanted to eat differently, it was having a good effect. 

[Bookmom]

Thank you very much for your advice.  We see the neurologist on Friday 4/19.  We are going to hope he is helpful.  I am going to contact the gastro doctor that is attached to our hospital/medical group and see if I can get him seen without our primary doctor actually referring us directly.  I reassured my husband that he should not feel better just yet.  I just hope I can get an endoscopy ordered by someone.  I just really feel we are onto something with celiac/gluten problems.  He has had a whole gamut of various symptoms over the last few years and nothing really explains it.  We have looked into many disorders/diseases which he may still be tested for to rule them out (MS, Thyroid, etc) Which are possibilities, but don't really answer everything. The neurological symptoms are now very unsettling for an otherwise healthy physically active father that is a business executive.  One thing I have realized is that there are many people that do not feel well with no answers, and that this is a very confusing area of medicine to figure out.  Thank goodness for resources such as this website/forum and people who are willing to give others information and advice. 

[pricklypear1971]

What Takala said....

And from experience I can say that meds can interfere with the healing process. I was on an antipsychotic which is also an antihistimine for Dermatitis Herpetiformis (skin form of Celiac) - and I could definitely tell a difference between me on it and off it. I also had neuro symptoms - muddied by hypothyroidism and steroids (rash again)/adrenal damage.

Aside from the neuro effects of gluten, I can also say that in the beginning you can surge emotionally from the slightest thing - so again, stay the course and manage the symptoms and stay gluten-free if that's where this takes you.

And finally, he may go through gluten withdrawal. Everyone is different...but that may cause temporary neuro changes.

[nvsmom]

In my first few weeks gluten-free, I went through the withdrawal with seemed to bother my gastro symptoms the least - I was very moody and tired, and the migraine it triggered was one to remember.  For me, withdrawal lasted about 2 weeks so hopefully he'll be over the worst soon.

 

If he is getting an endoscopy, he should be eating some gluten until the test is done to ensure it's an accurate test.

 

Best wishes to your family.

[GFinDC]

Hi Bookmom,

 

It is not unusual for people to feel worse for a while after going on the gluten-free diet.  It is a big change in diet for some people.  There withdrawal symptoms possible because gluten can affect certain recepters in the brain that like opioids do.  Another nuero type issue is vitamin levels.;  Celiac disease can cause malabsorption of nutrients.  So hubby may be low on vitamins or minerals that his brain, nerves and muscles need to function correctly.   Taking extra vitamins only helps a little in that case because until the gut is healed they won't be absorbed efficiently.  His doctor can test his vitamin and mineral levels to check for deficiencies.  B vitamins, especially B-12 is good for nerves.  Another issue is fat.  The brain has a lot of fat and nerve cells, so if you can't properly absorb fats that can be a problem.  Another useful test would be his triglicerides HDL LDL levels.  If they are very good for no apparent reason it may be a sign he is not absorbing fats correctly.

 

How long it takes to improves varies by person.  Some feel better quickly and other sit takes months or longer.  Keeping the diet as free of gluten as possible is very important as the immune reaction won't stop until all gluten is removed for a period of time.  Weeks to months.

 

Can you post the test results and ranges here?  Some people can interpret them most likely.  It  is not necessary for all tests on a celiac panel to be positive.  Just one antibody attacking your body is enough to do damage.

[Chiana]

I'm not a stomach celiac.  My big issues were psychiatric, cognitive, and neurological.  I will say a couple of things. 

 

1. A positive on *anything* on the test is a positive test.  It doesn't matter if it's by a narrow margin or it's only one of the markers.  Positive is positive.  Current medical guidelines support treating even so-called 'silent' Celiacs (people without any symptoms).

 

2. It does get worse for a few months before it gets better.  I was having anxiety attacks in public, and all sorts of crazy things.  Your body is adjusting to a big change.  The fact that it is getting worse is actually a sign that the diet's having an effect. 

 

3. The brilliant thing about being a celiac is that you don't really need all those crazy specialists.  If they can't figure out what's going wrong, you can just stick to your diet and you'll know one way or the other after a few-six months...no crazy tests needed, and no drugs needed.  At the end of the day, having a piece of paper isn't important -- feeling better is.

[Bookmom]

Hi Bookmom,

 

It is not unusual for people to feel worse for a while after going on the gluten-free diet.  It is a big change in diet for some people.  There withdrawal symptoms possible because gluten can affect certain recepters in the brain that like opioids do.  Another nuero type issue is vitamin levels.;  Celiac disease can cause malabsorption of nutrients.  So hubby may be low on vitamins or minerals that his brain, nerves and muscles need to function correctly.   Taking extra vitamins only helps a little in that case because until the gut is healed they won't be absorbed efficiently.  His doctor can test his vitamin and mineral levels to check for deficiencies.  B vitamins, especially B-12 is good for nerves.  Another issue is fat.  The brain has a lot of fat and nerve cells, so if you can't properly absorb fats that can be a problem.  Another useful test would be his triglicerides HDL LDL levels.  If they are very good for no apparent reason it may be a sign he is not absorbing fats correctly.

 

How long it takes to improves varies by person.  Some feel better quickly and other sit takes months or longer.  Keeping the diet as free of gluten as possible is very important as the immune reaction won't stop until all gluten is removed for a period of time.  Weeks to months.

 

Can you post the test results and ranges here?  Some people can interpret them most likely.  It  is not necessary for all tests on a celiac panel to be positive.  Just one antibody attacking your body is enough to do damage.

Ok, I went and found his recent lab results from a few weeks ago.  His HDL and LDL are high normal.   HDL-58, range was 40-60.  LDL was 115, range was 0-130.  And looking back he had abnormally high LDL from last fall (133) .  His B-12 from 6 mths ago was 633, range 211-911.  And most importantly his Anti Gliadin IgA from 2 weeks ago was 33.8, range of over 19 being a moderate to strong positive on the test sheet.  But did not show any other testing positive from that panel.   Going to the neurologist tomorrow.  Hopefully we can get him to listen to us!   

[Bookmom]

I'm not a stomach celiac.  My big issues were psychiatric, cognitive, and neurological.  I will say a couple of things. 

 

1. A positive on *anything* on the test is a positive test.  It doesn't matter if it's by a narrow margin or it's only one of the markers.  Positive is positive.  Current medical guidelines support treating even so-called 'silent' Celiacs (people without any symptoms).

 

2. It does get worse for a few months before it gets better.  I was having anxiety attacks in public, and all sorts of crazy things.  Your body is adjusting to a big change.  The fact that it is getting worse is actually a sign that the diet's having an effect. 

 

3. The brilliant thing about being a celiac is that you don't really need all those crazy specialists.  If they can't figure out what's going wrong, you can just stick to your diet and you'll know one way or the other after a few-six months...no crazy tests needed, and no drugs needed.  At the end of the day, having a piece of paper isn't important -- feeling better is.

Thank you for the advice.  I am reassuring him about feeling worse.  I will post more after we see the neurologist tomorrow.  That is so true what you said in your #3 statement.