Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Celiac Testing
0

4 posts in this topic

Hi everyone,

 

I am new to this forum. 

 

The past few years have been difficult. I am a 28 year old woman, and I've been on a medical rollar coaster.

 

In 2010, out of the blue, I started getting extremely intense headaches and I had nerve pain going down my right arm (neuropathy down my arm and into my pinky and ring finger). I was absolutely out of my mind. PT wasn't helpful, but acupuncture curbed the nerve pain somewhat. It still flares up from time to time, though. That ordeal lasted around 5 months.

 

There was a window of a few months were I felt relatively OK.

 

In the spring of 2011, I started getting nauseated after meals. The doctors told me it was probably reflux and told me to take prilosec. I went into a downward spiral into GI hell and I lost about 35 pounds. I was at a healthy weight before the drop, so I became very, very thin. They found out my gall bladder was sluggish, but there were no stones (biliary dyskinesia). They DID test for celiac during this time (via intestine biopsy), but lost the results. My GB was removed and I felt improvement in my digestion after a month post op. I made the connection between Celiac and GB issues with these articles...

 

 

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1433691/

http://www.ncbi.nlm.nih.gov/pubmed/6716342

 

All was still not well. Some days I felt like I was about to puke all day long, and I couldn't figure out why. Doctors shrugged and gave me more prilosec. I went on the paleo diet as an experiment in the summer of 2012, and a lot of my nausea disappeared. Not totally, but it certainly took the edge off. I started introducing non paleo things back into my diet, and wheat was what was setting me off. Over the fall of 2012 I fell of the paleo wagon and was in a perpetual state of nausea. I cut out wheat again this spring and I feel so much better. 

 

TMI BELOW!

 

When I eat wheat these days, I get very bad diarrhea. My period is also heavier when I don't eat wheat - when I was eating wheat I was skipping periods, or they would be very very faint. 

 

I suspect with the neurological symptoms (is the type of neuropathy I experienced a symptom of Celiac?), the loss of my gall bladder and the GI symptoms I experience with wheat that I have Celiac disease. I am treating it as Celiac disease and cutting all wheat out. Is it irresponsible not to get tested for Celiac? If I could get tested for it without purposely glutening myself I would, but I hesitate to purposely make myself sick. 

0

Share this post


Link to post
Share on other sites


Ads by Google:

to be honest,

its completely up to you if you want the testing or not. or whether you could cope with the symptoms long enough to have the tests. there,s many on here who havent had the tests and some - like me that had the tests and they turned out negative!!! you could be gluten intolerant rather than celiac -and you,d only know if you have the tests - either way its the same diet you,d have to follow.

some people struggle without a diagnosis ( i do)- but like i said its your call - i think the diagnosis only really helps if your younger - still at school/college where accommodations would have to be made for you (im from uk so not sure where your from, think this applies in america)

good luck :)

0

Share this post


Link to post
Share on other sites

If you are eating gluten at all, it might be worth your while to get tested BEFORE you commit to the gluten-free diet (it sounds like you are eating gluten light at the moment). Who knows, you might be consuming enough gluten to register positive blood tests - it doesn't take much, but do the tests sooner rather than later (when the autoantibody levels drop).

 

The blood tests are:

ttg IgA and ttg IgG

total serum IgA

EMA IgA

DGP IgG and DGP IgA

AGA IgA and AGA IgG (older tests)

 

You could also request nutrient levels be tested as celiacs are commonly low in iron, ferritin, B12, D, calcium and potassium. Thyroid problems are common in celiacs too so you might want yours checked.

 

Once you commit to the gluten-free diet, make sure you are on it 100%. Check your meds, vitamins, spices, sauces, and your baking ingredients (like baking powder or sugar) which might have become contaminated with wheat flour.  And good luck with it. I hope you continue to feel better.

0

Share this post


Link to post
Share on other sites

I haven't eaten gluten for about a month. Things aren't perfect, but I feel a heck of a lot better. 

 

It's kind of crazy how gluten makes it's way into the most ridiculous stuff...it's been an eye opening experience. 

 

Are there any brands of spices, as a whole, that aren't gluten free? 

Edited by zombiezombie
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
      104,092
    • Total Posts
      920,313
  • Topics

  • Posts

    • I got cross contaminated some time ago & the rash came back pretty badly. I've attached a photo taken on June 11th of my back. It was also in my scalp, around my neck, on my front, shoulders, inner wrists and more.   Tonight I am not itching at all! I haven't itched all day long!!!! I can't take Dapsone because I'm allergic to sulfa drugs & Dapsone is a sulfa drug. Obviously that means I also can't take any of the other sulfa drugs that are used to treat dh after Dapsone is not an option. After those comes tetracycline. I really needed some relief! I began researching the dosage & particulars on tetracycline for dh. Extensive & exhaustive research did not pan out. The best I could find was treating Bullous phemphigoid. That said something like 500mg of tetracycline 4 times per day and about an equal amount of niacinimide. I really didn't want to take that much medication and in such strong doses. So my doctor (my PC doc) & I began experimenting. We tried Doxycycline 100mg twice a day. It seemed to be helping some but it just wasn't enough. Then we upped it to 200mg Doxycycline twice per day. It has taken about 5 days of that & I sit here not itching all day for the first time in a long, long time! This may not work for everyone. I did want to post it though as it is, at present, working for me. I am not thrilled at taking it but I have toughed this rash out before for years with no meds and I just couldn't do it again.
    • I laughed out loud at the 'little notebook' comment!😂 It has been interesting to see how much progress has actually been made over the past 10 years that there is even a notebook to be offered or a restaurant to eat in that will accommodate our 'allergy'. 10 years ago I feared that I would never eat in a restaurant again.  But the notebook comment is spot on.  Hopefully within the next 10 years restaurants will evolve enough to offer us a menu that clearly lists the delicious and extensive offerings that they have lovingly prepared just for us...and not just an ingredient list with nutritional values that take longer to read than War and Peace.   I am grateful that there are places to go that at least make the effort.  Who knows?  Eventually there may be restaurants which will have to offer menus with GLUTEN options available!
    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,122
    • Most Online
      1,763

    Newest Member
    ForeverYoung&GlutenFree
    Joined