“Oh No!” Celiac… “Oh wait!” Gluten Free??

*Note from Sarah – Lisa is back to share with us more insights as she continues on her paleo journey.  You can read earlier installments from Lisa by clicking here.

“Oh No!” Celiac…“Oh Wait!” Gluten Free?? 

?????????

Gluten intolerance and celiac disease are two words we are hearing about more and more. (Words I am personally familiar with) You can be gluten intolerant and not have Celiac, but you cannot have Celiac without being gluten intolerant.

Running right behind all the talk of gluten intolerance and celiac, is a fast and furious health market filled with a glorious (or so we are to believe) gluten free world of  processed foods. You name it, and there is probably a gluten free substitute for it; breads, cookies, brownies, cakes, muffins – check, check and check.

Once diagnosed the next words you usually will hear are, “Go on a gluten free diet and you should feel better.” Hmmm what happens when you don’t?  Let’s be honest, most of us will switch a gluten filled processed crappy eating lifestyle style, for a gluten free proceeds crappy eating lifestyle. One is no better than the other, and I found that I felt no better either as I too fell into this trap.

I have 2 children who were also diagnosed with Celiac at the same time as I was, so not only was I trying to stay afloat in this new world I was trying to learn but I was also dealing with two young children afraid of how different their lives would be.

“Will we look different in the lunch room at school?”

”How will we eat at friend’s birthday parties?”

“Will we still even be invited to birthday parties?”

Questions and panic was coming at me in every direction.

After a few hours, ok let’s be honest, I will admit it, it was more like a few days that turned into weeks of me crying hysterically, as I walked the grocery store isles (yes I really did this) not knowing where to start, what to do, or what to eat. I was trapped in fear. All I put together was that when we ate, we felt sick, and when we didn’t, we felt better. The latter is obviously not a healthy solution.

Once my head cleared and I dried my eyes. I thought for a moment, “Wait! What about this grand gluten free world I had heard about”? Apparently you can eat just like before but without the pain and discomfort…GREAT!! win, win.

My kids where thrilled, and so was I. Problem solved……Not so fast….  I am here to say; don’t make the “just go gluten free” decision, we never got better. In fact, in time we felt worse. My daughter and I gained weight, my son lost more weight, we were still always hungry, malnourished and in no time had most of our celiac symptoms back.

Bloating, digestive troubles, IBS, DH, fatigue, headaches, active hashimoto, the list goes on. Why where we not feeling better, we were doing what we were told, we were eating gluten free!! It might have been processed junk, but it was gluten free and hey, that’s all that was supposed to matter, right?

The search for our health once again began. The amount of “plans” that I had tried to make us feel better is too long to mention, and as fast as I was trying one new plan, the next new book was quickly approaching. One day that new book was Everyday Paleo. I could not put it down, I was hooked, jackpot!!

ROCK ON THERE’S PALEO!!

From the first page, something about this plan made sense, especially the no grains. I had noticed all three of us complained about how we felt every time we ate any gluten free grain, even rice.

I liked the foods, her words, the theory behind it. It was kid friendly, in fact they were downright encouraged to be involved, and the fact that there was research and scientific proof that it worked made it the whole package. There it was in black and white, a delicious new world of foods, health and renewed energy ready to nourish our bodies.

To this day, the more I read, search and learn. The more I see most celiacs do not seem to do well on a diet filled with gluten free processed foods or gluten free grains. In my opinion, gluten free just seems to be another name for Celiac approved processed junk.

** Please note this is just my opinion and experience. I know some people have found success just going gluten free.

Until next time

Good health and much joy.

Lisa

Comments

  1. Annette says

    I was diagnosed with Celiac in 2004. I had this same exact experience. Over the past 3 or 4 years I have given up nearly all processed foods. I still occasionally enjoy a grilled sandwich made with Rudy’s GF bread. But, it’s not a main stay by any means. I do feel much better when I stay away from all GF grains. They just seem to drag me down. I’m not sure if it’s because they adversely affect my blood sugar with a spike and then a bottom out or what.

  2. Sharon Johnson says

    Awesome advice! A shame I didn’t read this before I put on more weight and now can’t shake it! Itg is the grains that did me in and sugar!

  3. says

    We had a similar experience when we first cut out gluten. I felt awful! Come to find out I don’t do well with any of those fancy substitute flours or products like xantham gum and guar gum. It turns out my son also has an allergy to corn, and to top it all off, is very sensitive to gluten cross-contamination.

    When we switched to the GAPS diet, (which is very similar to Paleo diets in many ways) we all got better. Real food and a protocol aimed at healing the gut was our answer!

    You can read more of our story at http://theliberatedkitchenpdx.com/meet-the-liberators/our-story/

  4. Bodil says

    I was diagnosed in november last year. While I was just “not eating gluten”, I still had diarrhea, and it felt like fire and glass were moving through my intestines every time I ate. I had expected to see at least some improvement in a week or two but I was only getting worse. I remember calling my mother and crying after three weeks, wondering how long I would have to wait before it got any better. She also has celiac and has been eating a low carb diet for a few years. We decided I should try to eat nothing but meat and cooked vegetables for a week or so. The pain went away after a couple of days, and I went paleo after that. Although everything is MUCH better now (hey I can eat and I don’t crap fire!!), I’m still having some digestive problems among other things, so I’ve been doing the GAPS diet for a month now to heal my gut completely.

    • Lisa says

      With you on the “fire” situation….lol it was not until I went Paleo and rid all grains that it disappeared for me too,

  5. charity says

    I found myself nodding my head throughout this post…this was totally me! Why was I not getting better? My dr’s were all convinced I was eating gluten still until I made them redo the bloodwork and then leaving them scratching their head’s. Paleo has been a huge help – I’m not bloated or uncomfortable anymore. I <3 paleo!

  6. Deb says

    Absolutely agree! A lot of the gluten-free “replacement” foods we found early on rely heavily on legumes for some of the flour along with the gluten-free grains – I think Bob’s Red Mill Gluten-Free Pizza Crust has fava bean flour in it – and we don’t digest beans particularly well either, so we get the usual intestinal issues even after a gluten-free treat of those. When we stay off the grains entirely, my Hashimoto’s leaves me alone, along with a huge reduction in my chronic hip pain.

    Processed foods are still using a lot of vegetable oils instead of good fats, too; these tend to be inflammatory foods, so it’s no wonder that my body still gives me grief for most gluten-free replacement foods.

    Going Paleo has helped us find some actual Paleo replacement foods to enjoy from time to time, like coconut flour brownies for kids’ birthday parties, so they’re still able to enjoy treats with their peers. It’s really amazing what we don’t need to eat. :-)

  7. Jenny rose says

    Gluten free processed foods can legally have as much as 20parts per million of gluten. So if you are highly sensitive, you can reactions to the processed food.. Paleo is the way to go!

    • Jennifer says

      Actually, there’s still no law for how much gluten a “gluten free” labelled product can have. The FDA still hasn’t done what they promised to do a few years ago.

  8. Megan says

    While I do not have celiac, my doctor recommended going “gluten free” for other reasons. I tried it; I cheated with all of the wonderful isles of gf processed foods. I lacked focus and purpose with the diet. I was miserable. I felt restricted and direction-less other than staying away from “gluten.” Oh, and I also didn’t feel any better. I decided to go paleo because it offers a structure, a philosophy and an adaptable plan – all of which made sense to me. Lo and behold, once I got over the ‘hump,’ I felt so much better and it was actually going (and staying) paleo than it was simply going gluten-free. Our whole family is now on the paleo journey and I’m so thankful!

    • Lisa says

      I am with you Megan, I too felt like I was running around uncontrollably eating this new gf life style with no boundaries, feeling worse and gaining what felt like a ton of weight…

  9. Mary Parker says

    Same with us!! My son is a “celiac”. We all went gluten-free and we all gained weight and felt like crap. We went Paleo 3 weeks ago and we feel wonderful!! We have all lost the weight we gained and have more energy and just generally feel GREAT. Paleo is definitely for us!

    • Lisa says

      Interesting how so many of us went gluten free, felt like crap and gained weight….we need to get the word out there.

  10. says

    Great post! I was diagnosed with CD over 30 years ago (shocking, I know) and would always preach to people what you can eat but never followed my own advice. Ironically, I would tell them you can eat whole foods like meat, fruit, and veggies, then go from there. I guess I never really delved into the crap I was eating while being gluten-free but people assumed you could lose weight on it-wrong! There is still crap out there labeled GF and people assume it’s healthier for you even though it’s still the same basic make-up. Once I started dating my future hubby I went strict GF (they didn’t know back then how serious it was) because I knew I wanted to have kids and didn’t want complications. Then I discovered paleo and it was the ‘golden ticket’ because now there were other ‘crazies’ like me that went GF and didn’t necessarily need to. I have to say I feel even better eating paleo than I did just eating GF. Not until I heard a friend say they were grain-free (I thought they were nuts) and started reading Primal Body, Primal Mind was I onboard to a better lifestyle! Thanks to Sarah for the inspiration and wonderful recipes :)

  11. Audrey says

    This is a message that needs to reach many people. I started, many years ago, with going dairy free. I felt better, but not completely. Then I went gluten free, and I felt better, but not completely. When I started paleo, I knew it was the answer. Now if I have a GF cookies, cake or brownies, I feel horrible. Paleo is the answer for so many people! When you learn why dairy, grains, and legumes are unhealthy for us, it all clicks.

    • Lisa says

      “This is a message that needs to reach many people” Thanks Audrey…that Is my hope…I see and talk to so many people struggling to heal on a ” gluten free” diet it breaks my heart…

  12. Julie says

    Lisa – I am in the same boat…For the past 4.5yrs I have been on a journey of figuring out what I am allergic to. I figured out it that gluten, dairy, corn, peanuts and when I was pregnant all nightshades all make me feel awful. A friend of mine started eating Paleo and I decided to look into it. It made so much sense to me. All of the grains, GF or not, were making me feel awful and not eating grains just seemed so logical. I have been eating this way for the past 5 weeks and I can now eat and not have stomach aches, bloating or be running to the bathroom. Now I just need to start moving toward exercise. I used to be an athlete but a back injury stopped me and I have never been able to go back without being in debilitating pain. My Chiropractor has helped me get to where I am not living in constant pain and can function but I want to thrive. Kind of hoping eating Paleo will get me there. Keep telling us about your journey. Thanks:)

  13. Marlene says

    My son was diagnosed with Celiac four years ago. My heart was breaking for him, so the first thing I did was figure out which candy bars and processed junk he could eat. And I wonder why he doesn’t feel better! I toy with the idea of Paleo, but still haven’t taken the plunge – it is a big change . . .

    • Lisa says

      Hi Marlene, I totally get it. Having been through it with my 2 children I can say make one small paleo change at a time….and before you know it it will just be how he eats….I am totally here for you if you have any questions.

      • Marlene says

        Thanks for that – He stayed home sick today (he thinks he may have eaten gluten – I think we just haven’t found the foods that love him back yet). Thank you so much for the encouragement. It is a good thing that comments can only be so long or I’d pour my heart out to you here and now :)

        • Lisa says

          Lol…feel free to pour your heart out any time…i know it is a terrible place to be especially when our kids are involved…if you would like to ask sarah if there is someway she can connect us via our emails I would be more than happy to listen and help anyway I can…let me know

          • Marlene says

            You are awesome – you have already helped me a ton just by sharing your story and being supportive – see you next post!

  14. says

    Great article! It took me four years to figure this out as well. I lost weight after my celiac diagnosis mainly because I didn’t eat out of fear of eating the wrong thing. Then I discovered all those wonderful GF treats and lost perspective. I ended up back at my original pre-GF weight two years in. I lost it again by cutting out sugar, but I still was doing lots of cheese. I finally beat the addiction just this month and finally lost that last ten pounds. It’s amazing how simple the solution is once we beat the emotional and physical addiction to foods that don’t nourish us.

  15. says

    Thank goodness when I was diagnosed as Celiac my Dr told me to go Paleo and wrote down this website for me while handing me Robb Wolf’s book! I have tried a few times to eat the “gluten free” food and end up horribly sick. A lot of people don’t understand how easy it really gets, I always get so many comments of how “unhealthy” this lifestyle is and how I need more carbs. I also was diagnosed with lactose intolerence as well as a bad allergy to yeast and brewers yeast so I am very limited in what I can eat – yet I am never hungry or unsatisfied, and I feel better than I have in years!!!

  16. Mark says

    This article is spot on and represents exactly what happened to me as well. Thank you for this post. It seem’s the paleo diet is what’s left for those of us who have tried everything else. Nature’s miracle. Thank you!

  17. Lisa says

    Love the words in your post….the beginning of your story sounds Iike mine. I would say the first 3 months of dx people where sure I had an eating disorder in fact my dr ask me so…. I dropped 20 lbs for the same reason you mentioned fear of food. I went from being a huge foodie to be afraid to eat anything. Once I discovered gf foods I piled the weight I had lost back on plus some just as fast as I lost it…

  18. Lisa says

    I just want to take a second and thank you all for sharing your stories. They are so warm, touching and honest.
    They mean a lot to me, please keep them coming.

  19. says

    I enjoyed reading this. When my first daughter was diagnosed with celiac it was very overwhelming. Our whole family went gluten free, naturally-meaning we didn’t try to substitute good grains for bad to make junk. We instead switched to more of a what-I’m-finding-out is a paleo way of eating. Thankfully, my family are meat eaters and proud of it. My daughter noticed a difference in the first two weeks.

    As time went on, and 3 more kids were diagnosed, I began exploring options, like making gf cake, etc. My daughter began having a new set of issues, was seriously anemic in spite of eating a lot meat. Amazing how processed junk, even gluten free, is pretty much worthless to our bodies.

    Thanks for your posts.

  20. Andrea says

    Can any of you tell me: have you ever been misdiagnosed by your doctor as just having severe IBS? My husband has been suffering from “issues for about 3 years now, he finally had a colonoscopy done to rule out anything serious, but was diagnosed with sever IBS. I read that other digestive issues can be misdiagnosed as such. A year ago we participated in a fast only eating fresh fruits, veggies, rice, and only drinking fruit juices & water-during this time he had little or no problems at all.

    And do any of you have any information about resources that might be helpful? Thank you so much!

    • Lisa says

      Yes, Andrea I was told for yrs it was IBS, however we are all different. Just don’t give up until you feel you have the answers you are looking for. Has he had a celiac panel done?

      • Andrea says

        No, he kind of took what the doctor diagnosed him with and accepted the medication. He is rolling his eyes at me constantly about food, but I am determined to try almost anything to get him back on track. We are on day 2 of no breads or grains.

        • Lisa says

          He sounds like a very lucky man to have you in his corner…please note once he has gone gluten free if he does decide to have a celiac test done it will give him false results. He has to be on a full gluten diet for the test to be done with the best results, but unfortunitaly even then it is not always correct. I know so many people that have had the test done only to be told it is negative to then find out years later YES they do have celiac…Uggg :)

  21. says

    I found this out too a few years ago. There was me in the store thinking I could buy all these gluten-free product that looked so lovely. Uh-uh. they were just as bad for us as gluten IMO. We’re just switching one problem ingredient for another in many instances. Thanks for your post.

  22. says

    Our family (2 adults, 4 kids) went paleo 3 months ago because I tried it for a few months and felt so much better (I found out I’m hypoglycemic). We’re that “freakish” family who elected to eat this way even though no one has been handed a diagnosis. Several members of my husband’s family have Celiacs so I figured we should all take the plunge before people are swelling in odd places and vomiting.

    Since then I’ve been trying to educate my friends and their children who have wheat sensitivies that say they’ve been “gluten free” for weeks and haven’t felt any better. Thank you for summing all this up because so many people need to hear it. Best wishes for better health!

  23. Jessica says

    I’ve had a similar experience with this gluten free “food”. I do not have CD, but an intolerance (diagnosed at age 5, I’m 28 now). I’ve had a long journey and battle with my body, emotions and mind. I’ve been paleo for 6 months, and it has LITERALLY CHANGED MY LIFE. Thank you for sharing your story with us. Reading your story is just fuel to my fire about this lifestyle and how beneficial it is for all humans. Congrats on making good decisions for you and your kids and congrats to your kids for being so brave. I had the same worries when I was a child not able to eat gluten. It was very rough. I still remember being made fun of in 1st grade for eating soup. You are all rockstars!

    • Lisa says

      Ahhh Jessica thank you so much. Your post brought tears to my eyes. Thank you for sharing your story too. Everyone here gives me motivation to stay on track, I really could not do it with out all of you….

  24. Dawn says

    I just finished my 6 weeks of eating gluten to do a biopsey for celiac. I don’t care what the results are. I wrecked 8 months of paleo and feeling good and now have to go through all the horrible heartburn and intestinal cramps and pain.

    I have previously avoided all grains so those “gluten free” treat have been avoided. On the day I went back to paleo I stopped at our whole foods and bought a gluten free banana bread but only because it had coconut flour and oil as the main other ingredients! Otherwise I have always avoided any prepared gluten free products and will even more so now that I read everyone’s reactions!

    My dream came true on the paleo journey–we now have a local csa that has shares with grass feed meat, pastured chicken and eggs and organic fruits and veggies! I have been giddy for 3 days about this, others just keep looking at me funny. It has been too expensive for me to go organic and grass fed, now it is within my budget, I get to support local farms and my groceries will be varied and all I have to do is pick them up! I hope all have something like this for them locally, I am so looking forward to trying new foods (don’t have a clue what to do with lamb but will learn!) http://www.lakesuperiorcsa.com

    This such an interesting journey,
    Dawn

    • Lisa says

      Wow Dawn, please keep me posted on your test results….but like u said they won’t really matter. I think u have every right to be giddy, I love it….a local csa that is fabulous….enjoy

  25. Renee says

    Luckily when we decided to have my daughter go gluten free to see if it would help her ezcema, I had already been Paleo for over 2 years. I knew processed food was processed food, gluten free or not. She has responded really well to being gluten free. Her ezcema continutes to clear up. Since then, both her and I have been diagnosed with Celiacs. There is the occasional gluten free treat, always from a quality bakery (it’s got to be really worth it to eat it!) and we don’t do that very often at all! She loves the Paleo treats. She often comes home from school and makes herself a snack of bacon and eggs. It’s great to see her shift from quick easy crappy snacks to quality food. I can see the difference in her health, appearance and attitude!

  26. says

    I totally agree! I have definitely felt my best by living on meats, veggies, with the occasional fruit and tiniest bit of dairy…But it’s still nice to know that there’s gluten free options for those times when only a pizza or chocolate chip cookies will do! :)

  27. Loretta says

    I have followed Paleo for about 2 years now. I tried to switch my daughter as well but have had alot of issues with her being embarassed because she can’t eat like the other kids. She got to where she wouldn’t eat her lunch I sent except for the fruit. She is 10 years old and is now following “gluten free/dairy free”. I really want her to eat Paleo but with all the tears and her not eating I have been unsure on what to do. I don’t want her to develop an eating disorder and girls are really sensitive. Any thoughts or suggestions would be great. She is currently taking vension sausage, fruit, and corn chips or gluten free pizza – cold…those are the only 2 things she will take and actually eat. HELP!!

  28. Jessica says

    Have been eating a paleo diet a few weeks, so angry I didnt do this years ago! I was diagnosed with celiac three years ago. I have never felt better since eating a paleo diet. I instantly noticed that I wasnt bloated even after days of the diet.

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