Yesterday I posted about the difference between celiac disease and gluten sensitivity. Check out Part 1 of today’s post here.
Now that we know the differences between the two, the difficult part for many people is figuring out whether they could have celiac disease or gluten sensitivity. The first and most important thing that I could tell you in this entire post is this: Do not go on a gluten free diet until you have your doctor perform the “celiac panel” blood test on you. If you go gluten free before the blood test, then the results would be skewed. As you remove gluten from your diet, your gut begins to heal. Antibodies that were being triggered by gluten before the diet wouldn’t be triggered anymore, which could produce a false negative blood test. Here are the recommended blood tests:
- Anti-tissue transglutaminase antibody (tTG – IgA and IgG)
- Anti-endomysial antibody (EMA-IgA)
- Anti-deaminated gliadin peptide (DGP – IgA and IgG)
- Total serum IgA
- Anti-gliadin antibody (AgA – IgG and IgA)-Used for children under 2
If the antibody blood test is positive, then your doctor will most likely recommend a small bowel biopsy (endoscopically). As of right now, the biopsy is considered the only way to truly diagnose celiac disease, as it assesses how much damage had been done to the villi of the small intestines. Unfortunately, many people went gluten free before they were actually diagnosed, so the only way for them to get a true diagnosis is to start eating gluten again and then get the blood test/biopsy. If you’re gluten free, you can imagine how nobody would want to start eating gluten again and put themselves through the awful pain that comes along with it. For a lot of people, they are okay with not knowing specifically which one they have: celiac disease or gluten sensitivity. Either way, they know that they have a problem with gluten, and the gluten free diet makes them feel better.
Unfortunately, some people get the blood test/biopsy and still get inconclusive results on whether they have celiac disease or not. For these people, it may be beneficial to get genetic testing performed. Two specific genese are said to be necessary for celiac disease to be present: DQ2 & DQ8. People without celiac disease can have these genes, and it doesn’t mean they will necessarily develop the disease, rather that they have a genetic predisposition to it. Please remember that genetic testing doesn’t diagnose celiac disease; yet, the absence of the DQ2/DQ8 genes means that you don’t have it. (You could still be gluten sensitive)
Some of you may have a similar story to mine. I got the blood test, which my doctor said was negative; however, one of my antibodies was slightly positive, which the doctor failed to tell me. This is another reason I always tell my clients to have their results faxed/mailed to them so that you can analyze them yourself or have your Dietitian analyze them for you. A lot of doctors will say, “You’re Fine,” but in my opinion, when it comes to blood tests of any type, what is normal for one person is not normal for another. All of my doctors thought I was crazy when I mentioned going on a gluten free diet to see if it would help. (You can read my entire journey to healing here.) So, since my blood test was negative, there was never a biopsy. I took matters into my own hands after my blood work and did the elimination diet, which completely took away all my pain. And when I do accidentally consume gluten, my joints swell up, my knees ache extremely bad, I get a headache for days, and sometimes the tingling in my fingers return. I also get very moody if I’ve somehow gotten gluten. (My symptoms depend on how much gluten I’ve gotten.) Remember, everyone’s symptoms are different, and the degree in severity of symptoms vary as well. For many people, the longer they’ve been gluten free, the more sensitive they become.
I want to end this post with this reminder: Do not go gluten free until you’ve had the “Celiac Panel” blood test done (and possibly a biopsy). I hope you’ve found some answers to your questions. My prayer is that everyone living their lives with undiagnosed celiac disease or gluten sensitivity can find the cure: a gluten free diet and a life free from pain.
Kristen M. Pardue, RD, LDN
Source: Celiac Disease Foundation
It all started on Feb. 17, 2010. I was at the hospital welcoming my twin niece and nephew into this world, and I casually showed my mom the bumps on my hands around the knuckles, asking her what she thought they could be. My mom has always been a worry-free mom, so of course she said it was nothing. Over the next few weeks, my hands started aching pretty badly, and the pain continued to get worse until one night I woke up with extremely stiff hands; this went on for weeks, which turned into months. Waking up in tears almost every night as I was in excruciating pain and fearful for what was happening to me. I couldn’t bend the fingers in my left hand. I remember countless nights that consisted of pain, crying, and waking up my husband, Eric, and asking him to pray for healing.
At first, my doctor just gave me a prescription NSAID (anti-inflammatory) to see if that would take the pain and inflammation away. (It didn’t.) At my next visit, he took an x-ray of my hand to see if anything could possibly be broken. (It wasn’t.) I asked him to do a complete blood work-up on me, and he agreed as he was then concerned that what I had could be several things: rheumatoid arthritis, lupus, parvovirus, & other diseases that scared me to death. While waiting on my blood results, I did exactly what I shouldn’t have done; I went home and researched every disease that he mentioned I “could” have. Now this was also a time when my husband worked almost every night, so I was home alone a lot and didn’t have anyone to take my mind off of all my fears. Panic, depression, and worry all filled my mind, especially after reading articles that talked about fertility problems being linked to some of these diseases. More than anything, I want to be a mom someday, and my mind kept going back to “what if I can’t have children?” “Will I have to live in pain the rest of my life?” The information you read online is downright scary. My results came in and the doctor couldn’t tell me much except that my ANA levels were high and that he wanted me to see a specialist, a rheumatologist. Unfortunately for me, the first appointment available was weeks away, so the waiting and worrying continued….along with the pain.
By the time my husband and I went to see the rheumatologist, I had talked to several people about what was going on with my health and from my own research, I decided to ask the doctor if he thought I should go on a gluten free diet to help my pain. He said absolutely not, and that the only people who need to go on a gluten free diet are those who have celiac disease and since I was not having intestinal pain/diarrhea, that I didn’t have celiac disease. (He was misinformed). Check out the symptoms of celiac disease here. I also talked to the doctor about whether I should try eating an anti-inflammatory diet to see if that would help. He told me that changing someone’s diet could not change inflammation in the body. (As a dietitian, I was shocked that he said and believed this). So I asked him what he though was wrong with me, and while he wouldn’t admit that he “didn’t know,” he said he wasn’t convinced it was Rheumatoid Arthritis or Lupus because all of my symptoms didn’t seem to match up perfectly. He said, “Well, you have arthritic pain. Here are steroids for you to take, and come back in a month.” This is the problem I had with all my doctors, and I cannot begin to tell you how frustrated I was with the fact that these doctors were giving me a drug to treat the symptoms, but didn’t try at all to find the CAUSE of the symptoms. Honestly, what hurt me worse was not the pain; it was not knowing what was wrong with me and not knowing if I was going to be okay. The unknown hurts a lot worse than physical pain.
So I reluctantly took the steroids everyday and hated that my appetite increased quite a bit (side effect of steroids). Some people take steroids the rest of their lives, and I just couldn’t do it. I’m not sure if this was a good or bad thing, but they didn’t work. The pain, stiffness, and swelling continued. Not only that, but when I would wash my hands, my fingers would get this burning, tingling sensation. Scary. When hurting that badly and not knowing what was causing my body to fall apart, I couldn’t help but let my mind go places I didn’t want it to go. I wanted to feel better. I wanted to be healthy again. I wanted the pain to go away. And most of all, I wanted answers. Someone please just give me some answers!
In the midst of all this, I did get a blood test done for celiac disease. (I had to BEG my doctor to perform this test.) The doctor called me and said I did not have celiac disease, but I had him fax me my results anyway. Being a health care professional, I know how to analyze labs, and one of the antibodies in this panel was slightly positive. Therefore, while I may not have celiac disease, I could possibly be sensitive to gluten. Unfortunately for most people, blood tests are inaccurate a lot of times. Biopsies are also sometimes falsely negative because it is easy to miss the damaged spots of the small intestines.
On May 5, 2010, I decided to do the elimination test myself to see if I would feel better without gluten. I don’t know exactly how long I was gluten free until I started to feel better, but I would say approximately one month. My joints became less stiff and the pain started to ease up. I wasn’t completely better, but any improvement was fine by me. Not only did I remove gluten from my life, but I also did my best at removing chemicals from my home. I’m still doing this, but slowly as I would run out of a cleaning product or beauty product, I would replace it with a natural product, free of harsh chemicals and toxins. Financially, we didn’t have the means to completely throw out everything and buy all new, so this worked for us. My sweet husband, Eric, was extremely supportive through all of this. He would even eat some things gluten free with me.
Just when I think all my prayers are answered because I’m starting to feel better, I start having twitching in different parts of my body. This wasn’t minor twitching that you get in your eyelid every once in awhile. This was every 10 seconds of spasms, twitching, or whatever you want to call it all over my body. Eric told me that every night while I was sleeping, he would wake up and feel what was happening to my body. He said it felt like a wave traveling down from my back to my feet. Eric also described the waves as very faint, but that they would move so fast down my body that he knew it wasn’t anything I could possibly control.
So I went to two more doctors who couldn’t figure out what was wrong with me, and then I ended up at a neurologist. He performed a nerve study and an MRI on my brain to see if I had MS. Both were negative, and he said he could give me a muscle relaxer but I declined. The twitching and spasms continued, along with tingling that shot up my arms. My body was out of control. I remember crying out to God and begging him to heal me. There were numerous times when I was home by myself and just lost it. As a dietitian, I so valued health and wellness, and the fact that I was sick and didn’t have answers killed me. I wanted to be healthy and feel good again.
God did answer my prayers by providing just the right people and resources that would help lead me to healing. On October 27, 2010, I went to an alternative doctor here in Nashville. To make this already long story a bit shorter, he agreed I should stay clear of gluten (1 in 7 people have a gluten sensitivity) and he also took lots of blood work and did a stool test. Several things were off, but the main things were my elevated ANA, which I already knew, my thyroid levels were low, and my stool test showed very high amounts of heavy metals in my body (which he says lots of people have). He started me on a chelation process which consisted of me taking supplements to rid my body of the heavy metals. A very healthy diet would speed the process up of detoxifying my body. “Eat healthy? I’m good at this, but I can be even better.” Eric and I switched to organic for most foods, and we ate more vegetables than ever before (still do). My doctor also gave me Armour, which is a natural form of thyroid hormone, unlike the synthetic kinds that drug companies and most conventional doctors prescribe.
I am a new woman and have never felt better! I go back in May 2011 for more blood work, and I’m just praying that my ANA and thyroid levels are normal again. What matters most right now is how I feel, and I can tell you that I have never been so thankful for my health. I could have continued letting all my doctors tell me to continue taking drugs (that weren’t working) and go on with my life, but I wanted to get to the root issue. I healed myself naturally and so can YOU.
Kristen M. Pardue, RD, LDN