• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Husband Tested Positive For Anti Gliadin Iga On "old Test" And No One Cares. Need Advice!
0

9 posts in this topic

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.....

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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. 

0

Share this post


Link to post
Share on other sites

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. 

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites
Ads by Google:


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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites




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!   

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      107,354
    • Total Posts
      935,657
  • Member Statistics

    • Total Members
      65,034
    • Most Online
      3,093

    Newest Member
    angelaemely
    Joined
  • Popular Now

  • Topics

  • Posts

    • I can converse at a basic level but relatives who are Okinawan and live here were supposed to help me (they do not speak English). I also have a printout in kana and kanji explaining my dietary restrictions. Relatives intentions are 100% good but clearly do not understand cross contamination and that even if they cannot see the "mugi" it will still make me sick despite repeated explanations. I also need to be very careful not to offend relatives as this is a very sensitive time (I am here for research & also due to a recent death in family). So I am on my own. If I knew it was going to be this nightmarish eating gluten free I would have packed a week worth of canned food and shipped in a checked luggage bag. I will try to see if I can go to relatives house and boil eggs myself but that probably won't be until Thursday at the earliest. Packaged foods are scaring me at this point as I don't know what is safe to eat - i know that just because the word "mugi" isn't in the label doesn't mean it necessarily is gluten free.
    • Many thanks for this  I'm going to give it some serious thought...
    • Ugg I feel you there huge japan fan here, normally I would suggest nordicware, microwave cooking ware, and buying raw fish, egg,s and veggies then cooking in the steamer, grill plate, and omelette maker for these kinds of trips or bringing meal bars. I have carb issues also and eat ketogenic, while they might not taste that good julian bakery make protein bars that are dairy, gluten free and ketogenic diet approved with low carbs, they also make a grain free granola mix , breads etc. Hmm are you good with Japanese? I can get you some romanized phrases for medical terms, food, and gluten related questions so you can try to talk them over with people. I have not been up there in years but I have a old friend up there who used to be a navy medic and lives near there who I would have help me out with issues and finding stuff. Wish I could offer more help, this last minute kind of thing there is not much  I can do.
    • I'm in Okinawa for a week to visit family and for research-related reasons, and despite research on eating gluten-free in Okinawa, things have been unexpected and going wrong from the start. I've been here for 24 hours now and have already ingested at least 3 items with gluten (I just got over what doctor was pretty sure was refractory celiac and was recovering well even after a big scare with eating barley after mix-up with a specifically prepared meal for an academic banquet). Now after the past 24h appear to be developing severe neurological symptoms. lymph nodes around neck are palpable and neck is extremely painful. Arms are weak and semi-numb on left side, clumsiness, arms and feet are burning in areas, balance issues, myoclonic twitching, visual impairment on left side (have confirmed optic neuritis), brain fog, EXTREME thirst (drinking 3-4 L water and still thirsty), and fibromyalgia -like symptoms. I took prednisone that my doctor gave me but doesn't seem to help much at all. I have contacted my doctor in states but don't think she can do anything until I am back and with lack of understanding for celiac here I don't think going to hospital is a good idea (not to mention have no idea costs with US health insurance), Stomach is growling but I currently am nauseated, feeling extreme fullness and have absolutely no appetite but will have to force myself to eat something in AM as i have to somehow make a professional research presentation. Is there ANYTHING i can do to lessen symptoms? Has anyone been in Okinawa and able to eat gluten free? -if so, can you please suggest what to eat from what store - I can read hiragana and katakana and a few kanji but am not fluent in Japanese. I have a small fridge but no stove in this hotel. I am in Naha and can't travel far, especially more so with symptoms. I can't eat fruit (fructose malabsorption), asked relative to boil eggs (she bought store pre-boiled eggs which I am scared to eat despite the lack of the kanji for "mugi" on the label), when I am having neurological symptoms any carbohydrate exacerbates symptoms, and I'm concerned that something like nuts or beans may worsen inflammation and symptoms if there is recent GI damage
    • So here's my adderall report.... I take it in the am, after my other melds and coffee. It's the XR version so it lasts all day for me, but the most helpful part is the first 4 hours. It takes a little while to kick in, and then I notice a calming effect. I'm usually very anxious so this is nice. I notice I'm more positive, and feel actually pretty happy, although I've got some major things pressing down on me I feel like I can think about them straight and get them taken care of, instead of panicking. I'm not starving all the time like I usually am. I felt hungry since I started taking my thyroid med and am worried I started gaining a bit of weight due to eating more. Now I don't feel like I need to eat between meals. I'm back to making every bite count towards nutrition. I've been better at taking care of more adult type duties. I'm happy to say that it's been a very good experience so far and I don't feel like I'm taking so much that I get a high from it. A decade or more ago I took double the dose I'm at now and I can tell you I was feeling that super happy high when it first kicked in, and although it felt great, it scared me as that is so on the path to some major addiction issues, you know? I can tell you that the current dose makes me feel like I did in my 20's, and I was pretty kick a$$ then, lol!
  • Upcoming Events