I’m Gluten Free and Still Sick?

Around month 6 of being gluten free…I just knew that something wasn’t right. I stopped improving, still felt terrible, was reacting to TONS of foods and having lower back pain. Any food with over 1 gram of fat was still going through me within minutes, I was exhausted, pale, couldn’t sleep, severe leg twitching….and yes, this was the new and improved me, lol. If I could do it all over again, the moment I had this instinct, I would have made an appt at either the Columbia Celiac Center or the Chicago Celiac Center asap. To be honest, I’d been met with so much opposition of 5 years and 75 doctors before my diagnoses and so I thought, “no one can help me now, I’m on my own.” But now, I know that’s not true at all. There are professionals who take this disease VERY seriously. When I attended a meet and greet at Columbia in NYC, Dr. Peter Green from the Columbia Celiac Center said that “most of the patients we see are not here to get a diagnoses, they are here because they know gluten is the problem, but yet, they still feel sick.” I was in awe of that, captivated by the thought that maybe I wasn’t bound to years of “waiting” until my body healed itself. And low and behold, that thought was spot on.

Okay, back to you….as time passes, if you’ve noticed several improvements…but then…somewhere along the healing process (4 months, 6 months, a year, 2 years), you’ve noticed that you’re no longer improving and your instincts say that you should be making more progress than you are, here are a few options to chat with your health care provider about…and by chat, I mean firmly ask them to listen to you, test you, and help you remedy the situation…and if they don’t….leave them in your gluten free dust and go to someone else – stat

1) Leaky Gut Syndrome – This has been a huge culprit for many Celiac patients. According to Dr. Andrew Weil, Leaky gut is is “the result of damage to the intestinal lining (small holes). As a consequence, some bacteria, their toxins and incompletely digested proteins and fats not normally absorbed may “leak” out of the intestines into the blood stream. This triggers an autoimmune reaction, which can lead to gastrointestinal problems such as abdominal bloating, excessive gas and cramps, fatigue, food sensitivities (reactions to other foods in addition to gluten), joint pain, skin rashes, and autoimmunity.” Leaky gut is not always recognized by main stream doctors, so some folks seek out a holistic doctor or a dietitian to look into this. Here are 2 articles and a video that may be of help if you suspect leaky gut syndrome.

2) Lactose intolerance:  is the inability to digest and metabolize lactose, a sugar found in milk. It can results in symptoms including  abdominal pain, bloating, flatulence, diarrhea, nausea, and acid reflux. In a Celiac patient, once the villi in the small intestines are damaged, they can no longer break down lactose. So many patients stay lactose free during the first 6 months – 2 years, or until their villi are healed up and then they slowly add lactose back when the villi can break it down. Some people get back on dairy, others find that it doesn’t sit well with them, so they give it up completely. If you suspect dairy is giving you problems, a 30 day elimination trial may be a good option for you.

3) Cross- Contamination: You may still be ingesting gluten via sneaky ways such as lipstick, shampoo, conditioner, hair spray (I wonder how  may of us are literally spraying wheat into our mouths each morning), soaps, lotions, vitamins, sauces, eating out, sharing a toaster, sharing utensils with gluten eating friends. Another possibility is that your food may be on the bottom shelf in the fridge (so gluten containing foods on top may be falling into your gluten free foods). Be vigilant in going through your day to make sure gluten isn’t sneaking it’s way back into your life.

4) Low pancreatic Enzymes: This one is all me. I was still having the big “D” and like I mentioned, I was reacting to EVERYTHING.  I literally rotated 9 different foods for 11 months because I was having so many reactions, dead serious. Then 6 weeks ago I finally saw a Celiac specialist at Columbia University, Dr. Ben Lebwhol. He said that a majority of Celiacs have low pancreatic enzyme function. This means that a patient cannot break down carbs, fats, and protein without the enzymes from the pancreas, causing diarrhea, fatigue, malabsorption and the list goes on. When I asked why I’d never really heard about this, he shared that it’s something that’s been brought to their attention this past year in research. He shared that they don’t know WHY Celiacs have low pancreatic enzyme function, but that they DO know what to do about it: Supplement the patients with these enzymes via pills. A doctor can prescribe a pill called Creon, or there is also an over counter version that is not prescription strength called All-Zyme double strength. Unfortunately, the pancreatic enzyme test (fecal test) is often inaccurate, thus many doctors trial the enzymes with the patient for 30 days to see if there is any improvement.

5) Malabsorption: While this may seem like an obvious choice, the bottom line is that even if you get a clean biopsy, your intestines could still be healing…the scope can’t see all the way down into your intestines…so many of your symptoms, like mine, may still be stemming from malabsorption. A few examples are:

  • UTI’s- Possible Vitamin A Deficiency
  • Numbness, Tingling & Twitching-  Possible Calcium, Magnesium, Zinc Deficiency
  • Fatigue- Possibly B12 or B6 Deficiency or Vitamin D Deficiency
  • Omega- 3 Symptoms can include: fatigue, poor memory, dry skin, heart problems, mood swings or depression, and poor circulation (I have very low omega 3, since being on it, my circulation and “debby downer” feelings toward life are long gone)
  • Other malabsportion issues could be causing hormone challenges or thyroid problems….

6) Low Stomach Acid: Many Celiac patients have depleted stomach acid, thus they are unable break down foods such as apple skins, vitamins, meat etc, resulting in chest pain and acid reflux. To remedy this, doctors will put the patient on over the counter HCL pills (hydrochloricacid).  Another helpful hint with low stomach acid is to not drink liquid with meals (drink 30 minutes before or 1 hour after meals), since fluid dilutes the stomach acid further.

Here are a few health care resources that are VERY familiar with gluten intolerance and Celiac. They can help you seek out why YOU don’t feel like a gluten free rock star:

So…back to me …. after meeting with a specialist at Columbia and learning that the pancreatic enzymes were one of my main problems. I originally thought I had food intolerances, turns out though, my body could not break the food down…so I was experiencing all sorts of very uncool symptoms. However, with the pancreatic enzymes, I went from eating 9 foods to eating as many GF foods as I wanted…overnight…isn’t that wild?! I still have to keep my fat intake low and I’m still working on a few symptoms due to malabsorption, however, huge progress is happening in my life… God has really blessed me in this crazy (forever and a day long) journey, lol.

Back to you…so if I could leave you with this thought: please don’t wait 5 years to see if you will get better.  Try and see what you can do to help your body feel better NOW. Look into the possibilities I listed and seek out someone who specializes in Celiac and gluten intolerance asap to see why YOUR body isn’t feeling it’s best. Everyone reacts differently to Celiac and gluten intolerance, so you are your own greatest advocate in finding out the root of your pain. And yes, I know that when you don’t feel well, the last thing you want to do is keep seeking help, but I promise you…you are THIS CLOSE to feeling amazing…so go for it! Reach out for the help, keep digging and don’t settle for a sub-par quality life… it’s totally worth it…you’re worth it.

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