After over 10 years of almost debilitating pain for Superman, we finally got some answers. 10 years of being brushed aside by our conventional doctors, them telling Superman he was “exaggerating things” and that he “just needed to eat more fiber” and he basically needed to “toughen up.” We did eventually get a Celiac diagnosis through our conventional doctor, but only after Superman insisted he be tested (since she consistently told him he did not have Celiac since only 1% of the population has it). Her advice? Remove gluten and you’ll be fine.
We were originally ecstatic that he finally had proof that something was wrong. We had a honeymoon period of weight gain (he is 6 feet tall and weighed a whopping 130 pounds), and a small reduction in symptoms, but after a few months, he plateaued and even worsened. After going back to his regular doctor multiple times, he was told he must be getting cross-contamination somewhere and that all he had to do is cut out gluten and he’d be fine. Believe me–he was not getting gluten. As soon as he was diagnosed, I removed any gluten items from our home, and he did not eat out. I was anal about it. So then, his doc said he must have IBS. Yeah, thanks doc. You have no idea what’s wrong with him, so let’s just categorize him with something that you have no cure or treatment for. Her solution was all about treating a symptom…indigestion? Take some Tums. Blood in stool? Eat more fiber. Weight loss? Eat more food…especially whole grains. Intense intestinal pain? Well, don’t eat spicy foods. It was never about figuring out why Superman was experiencing symptoms, merely masking them.
A homeopathic doctor finally diagnosed him with dairy, wheat, soy, corn and goat milk allergies and told him he may have other allergies as well. This was a huge blow, but at least we felt like there was something we could do to help him. (I will add–I was very skeptical of this whole “food allergy” thing, since I had never known anyone with food allergies, and all conventional wisdom made food allergies sound bogus.) I started researching food allergies and discovered that many people with Celiac developed other food sensitivities as a result of “leaky gut” and the issue of food particles leaking into their blood stream. I read “The Paleo Solution” by Robb Wolf and decided our whole family would revamp our diet. We cut out all dairy, soy, grains and sugar.
I desperately wish I could write that Superman was healed. I wish I could say that our drastic dietary changes made everything go away. They did make a lot go away: my arthritis, neck pain, sleepless nights, fatigue; our son’s asthma, allergies and many behavioral issues; many many of Superman’s symptoms. But still, still some of his symptoms have persisted, even now, two years later.
I am a big believer in the power of prayer. Last year for Lent, I decided to get up a 1/2 hour early each morning to pray for Superman’s healing. I truly believed he would be miraculously healed. He did improve, but again, he wasn’t healed completely. I felt defeated, I’ll admit. What else could we possibly do?? This poor man had eliminated nearly all foods with the exception of meat, veggies, some nuts and a little fruit (a blood test of over 150 foods revealed that his autoimmune system was in overdrive and was reacting to almost everything, including spices, sugars from fruits, potatoes, eggs, and many, many other things).
Don’t get me wrong–Superman has a lot more good days than he did before. But still, out of the blue, his symptoms will resurface and once again we’ll feel defeated.
It’s frustrating. It’s tiring. It’s saddening and painful and I’m not even the one going through it. And I’ll admit, as much as I enjoy cooking and coming up with new creations that will give Superman some variety, I wish I could put curry powder on some chicken and not have to worry about how he’s going to physically react. Or be able to just order take-out and sit and enjoy it as a family instead of having to cook separate meals. Some days I feel like there needs to be a support group for wives (or husbands) of autoimmune/food allergy sufferers.
So, where does that leave us? Right where we are. We’re here, in the middle of it all. Superman has more good days than bad days now, and believe me, we appreciate the good days like nothing else. And despite the setbacks and frustrations, I’m thankful he’s here and that he’s alive. A few years ago, he was ready to die. In fact, he was so sure he was going to die, that he got all our affairs in order and made sure I knew exactly what to do in case of his death.
We’ve realized that Superman’s health is like a puzzle. We are constantly discovering new “pieces” to fill in toward his healing. Vitamin D deficiency was a big piece of the puzzle, and once we figured that one out, we noticed a decrease in some of his symptoms. (*Edited to add a few more “pieces to the puzzle”: the discovery that he has adrenal fatigue, absorption issues, enzyme deficiency so he can’t break down foods, and a host of other issues that can be somewhat healed by supplements have each been other notches in his health belt buckle) It used to be that he couldn’t even run a 1/4 mile without feeling completely exhausted. Now, he runs nearly a mile every day and actually feels good afterward.
Although I don’t have a miracle story to share, I still have the hope that one day I will. I am hopeful that at some point, I will be able to write that he is finally free from his pain. In the meantime, I’ll cook good food (bland food for him!), and continue to pray for his healing. I am looking into Nutritional Therapist training programs where I can go to learn even more, and possibly find pieces to the puzzle that may eventually lead to his healing. I love Superman more than anything else on this earth. I love my kids, too. But that man is my soul mate and my best friend. I will do everything I can to help find that final piece of the puzzle!
Julie says
I’m sorry to hear about your difficulties with this. It’s no fun, but it is a process, and it will take time. Sometimes people see immediate improvement; for others it takes weeks, months, perhaps even years, depending on the severity of the intolerance/allergy and the weakness of the immune and GI systems. Progress is progress, and I am happy that as a family you are noticing relief from chronic symptoms! Even with “just” a gluten intolerance, after diagnosis I had to eat only veggies, fats, proteins for about 4+ months until my insides healed enough to handle other foods.
I’m sure you have probably already done this, but have you replaced all of your plastic/porous/nonstick/scratched cookware, kitchenware and utensils since going gluten-free? Like I said, you’ve probably done this long ago, but perhaps this is a missing piece of the puzzle.
Laina says
Oh my 🙁 I will pray as well for Superman’s healing! I can totally identify with the struggle of finding a diagnosis. I’m currently seeing a naturopath who diagnosed me with leaky gut. I’m fighting it with a combination of a cleanse diet followed by paleo, and accupuncture. I’m also having a suite of tests done that check immune responses to specific food triggers, but from my understanding, it’s different than standard food allergy tests. Unfortunately, there isn’t much info on the website, but the tests are from Cyrex Laboratories (www.cyrexlabs.com). Just thought in case it’s something you all haven’t tried yet.
Best of luck, and again, will keep your kindred souls in our prayers!
Holly says
I’m so sorry for Superman, you and your family. He is so lucky to have such a dedicated, loving soul mate that will do anything and everything for him! I don’t have any wise words of wisdom or any knowledge that can help you but I feel some of your pain regarding feeding him, variety or just a break sometimes. We have some severe (some life threatening) limitations in your house too: allergies to all nuts, coconuts, eggs, nitrates, fish, mustard and an aversion to most veggies and any meats besides the standard beef, pork & chicken. I struggle to come up with much variety as most Paleo folks in the community can do. I admit I am sometimes jealous! Hang in there. I’ll add you guys to my prayers too!
XLMIC says
Thank you so much for sharing this. I read it to my husband (I am the allergic one) and he really relates to your perspective. Thank you!
Brandy avila says
I’m so sorry that your family is dealing with these struggles. We’ve had similar issues in our family. It takes so long to heal when your body is so damaged by celiac. One thing that we found very helpful with our son was adrenal and detoxification support. He had messed up his adrenals so bad from all the food allergies that he needed that extra help. We also found that he has always had poor detoxification and that either caused the food allergies or it was the other way around. But improved detoxification has helped so much. My son is not 100%, but he’s so much better. He sleeps, isn’t in pain and can play tennis again. These problems are so complex and take so long to heal but it is worth it in the end. There are some great tests out there that check for all this stuff. If you haven’t already looked into this kind of thing feel free to email me and I’ll send you the info on the labs our doctor ordered.
radlandon says
Thanks for your support everyone! Julie–thanks for the advice on the cookware. I hadn’t thought of that. Hmmm…think this is reason enough for me to get a new set of stainless steel cookware? I think I need to let Superman know it’s for his health! =) Laina, that test looks very similar to what Superman did–it wasn’t offered in our “regular” doctor’s office, but was at the Naturopath. It was a big eye opener! Holly, yes–the break is what I desire. A break from it all! XLMIC, thank you! I’m glad it resonated with him. Brandy, my husband has messed up adrenals as well. I am currently reading a book called “Adrenal Fatigue” to learn more about it. I agree–these problems are very complex and not an easy fix, unfortunately!
Jessica says
So sorry to hear of your husbands condition. I have a friend with severe digestion issues that they are continually giving different diagnoses – all of which help for a few weeks/months and then she is back at square one. I can only imagine how frustrating it must be.
I was wondering if you have ever tried a nutrition supplement called Body Balance? It is a homeopathic product made by Life Force from sea vegetables. The theory behind it is that our food is grown from depleted soil and the ocean is still self replenishing and therefore a much better source of nutrients. I myself have chronic pain problems (not digestion) and take it every day. It has tons of testimonials from people with chronic pain, fibromyalgia, diseases, or completely healthy that have had their symptoms basically vanish. If you would like more info please let me know. Good luck!!
radlandon says
Hi, Jessica. I haven’t heard of it, but I’ll check it out!
Momat32 says
Has Superman been tested for parasites, bacterial overgrowth, and yeast? I had a story similar to his and finally after all that food elimination had this testing done by a integrative medicine doc. Now, after a month of antibiotics followed by 3 months of probiotics and other supplements to repair my gut, I am doing SOOOO much better.
Healing is possible. Don’t give up.
radlandon says
Momat, yes, he has. He has a Candida problem (just another thing!) which is why he pretty much eats no fruit (with a few exceptions). Thanks for the encouragement!
treehousemom says
Something to think about. . . Our daughter was diagnosed with chronic Lyme disease last year. She had symptoms like IBS, weight loss, muscle and joint pain, migraine type headache–along with many others. Lyme is difficult to diagnose and must be made clinically as well as through lab testing. IGeniX lab in Palo Alto, CA is the best in the country for testing–with most labs, you are likely to get a false negative, therefore decreasing the chance of proper treatment. Just an idea to explore. . . We have been following the Paleo diet with my daughter and it has made a difference in her symptoms!! Love your site!
radlandon says
Thanks, treehousemom! I don’t think Superman has that as he really doesn’t have Lyme disease symptoms, but it’s always worth looking into. Thanks for the info!!
Sunny says
I am no expert, but have read about GAPS diet…. they have Yahoo support, a FB page and it is all about gut HEALING… so maybe the paleo eliminated the irritations, but not corrected the injury? Check it out when you have a chance.
Maury says
That cookware idea may really be something to look at. I had a client who was severely allergic to sesame. He once wound up in the hospital with anaphylactic shock reaction b/c he ate some food that had at one time, a long time prior to the incident, had sesame oil cooked in it!
PaulaB says
You might also get some ideas from Jordan Rubin’s books.
Maury says
I just read that eating raw garlic is really good at fighting candida. If you can eat it straight up that is the best. If not you can add it to soups/stews meats. The post said to chop it up let it sit out for about 10 minutes before adding it to your food.
Hope that helps.
Amy Edelen says
Hi Shanti,
Your prayer for a support group has just been answered as I am walking a mile per day I can now handle after 3 years on death row in Superman’s shoes (15 years experience in eating perfectly) and have a whole crew of friends dealing with the same issues. Our conversations are supportive, loving and healing and together we have a wealth of information and personal experiences with what works and what doesn’t for each of us which often overlaps. We have switched entirely over to organic shampoo and body washes. Also have the names of some great practitioners who can further nail specifics… one naturopath told me I was using too many essential oils and geranium wasn’t compatible with me. I *thought* I wasn’t using geranium but got home and found it in my shampoo. It sounds like Superman is in severe stress as am I… per my osteopath/rheumatologist onions, garlic and sulfuric vegies like broccoli and brussel sprouts exaacerbate hydrogen sulfide. I can handle extremely little sugar. I eat it in dark chocolate chips! lol Carbs over 24 g per day cause severe pain/inflammation. Good news is we are gaining on it and reclaiming quality of life every day. I’m in Folsom just down the road. 🙂
Amy Edelen says
Can also give you a heads up when symptoms are likely to be in flare, like today, cause there is a solar flare. Low pressure weather systems are difficult often too. Us girls may be a bit more dramatic as we jump to “I’m dying” fear when we get really ill until another one of us reminds us that we ate something we weren’t supposed to, overdid it, etc. and we feel much more calm. lol
Marni L says
I just found your blog through EasyPaleo, and I’m so glad I did! Though I’m not as sever as your husband, I do have arthritis with inflammation that is quite touchy. I’m only 4 months in to paleo eating and have noticed lots of improvements with decreased anxiety, less inflammation, and better sleep, but I still have a ways to go. Not that I want others to suffer, it is comforting to find another “paleo” story that isn’t instantly healing. It’s good to know that healing can take much longer than expected, but that healing is still happening. Thanks for your post and your honesty!
radlandon says
So glad you found us! Yes, it can be discouraging when it doesn’t happen quickly. Thank you for reading, and I hope you continue to notice improvements!