Taking the full measure of life

How did you get diagnosed as an adult? (food allergies & celiac/gluten intolerance)

August 4th, 2008 · 16 Comments

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There’s been a crescendo of questions lately coming at me by email and blog comment about how I came to learn that I have food allergies and gluten intolerance/atypical celiac disease. Also, people keep commenting in person to me and my best friend—she was diagnosed with food allergies after me—that it ‘must be something in the water’ where we grew up that makes us have similar food allergies.  Though people are mostly joking when they say that, the truth is, when she saw and heard about my symptoms, and learned about those and other possible symptoms, and when she saw them clear up once I eliminated certain foods, she grew curious whether some symptoms she had might be caused by the same things.  In other words, it’s not proximity of living that made us have the same food allergies; it’s proximity of living that made us mutually aware of the food allergies.  And she’s not the only one out there, so here’s a primer on my personal history for those of you who might have food allergies or celiac/gluten intolerance.

One thing I’ve learned is that when it seems like problems in our bodies should be systemically related, they probably are, even if conventional medicine doesn’t understand why or even recognize the overall issues.  So my story here starts a long time ago and runs to the present.

I’ve had an easily upset stomach as long as I can remember.  Plenty of people develop no symptoms with celiac disease or food allergies or only have quiet ones, but that wasn’t me.  I spent a lot of time having diarrhea as a kid, and I had stomach cramps, painful gas, etc., at times. When I was a child, I knew I couldn’t eat eggs without getting sick, but I didn’t think of it in terms of a food allergy, because people didn’t bandy that word around so much then (especially not in rural areas).  I did know I had some seasonal/inhalant allergies, but I didn’t connect the two.  I quit eating scrambled eggs but continued to eat other foods that contained eggs.  I’m not saying that my stomach pains were all about the eggs, because I’m sure the eggs weren’t the only cause.  They were just the only cause I recognized.  And honestly, I didn’t realize how much other people didn’t have those kinds of problems.

I continued to get have medical issues with a variety of things as I got older.  I had an underfunctioning thyroid; an aching colon (‘a touch of colitis,’ the doctor who did my colonoscopy said); small-bump, widespread acne that wouldn’t go away no matter what; bouts of extreme depression; and other various issues.  Though I got through life, I generally did not feel good.  Doctors (who generally didn’t seem to take me seriously) bandied about terms like IBS and Crohn’s, but I didn’t feel like the diagnoses of those conditions fit, exactly, nor was I sure what purpose they would serve me. (I wasn’t very astute about dietetics at the time.)

At 21-23, I dealt with a rare form of ovarian cancer that doesn’t generally spread quickly.  I also had my gallbladder removed because it ‘didn’t look good.’ (The doctors told me it was a vestigial organ and didn’t matter, and they were wrong. But that’s another post altogether.) I lost one ovary and had multiple tumors removed from my body with each surgery.

Soon after the surgery, I started having what I thought was repeated bladder infections/UTIs.  A year or so later, after my pain had gotten consistently bad in that area, I ended up being diagnosed with interstitial cystitis, a condition where the protective lining of the bladder has deteriorated, causing the acid in the bladder to sear the walls of the bladder.  When I had my cystoscopy to check the extent of the damage, the doctors discovered I was in the worst 10% of cases.  My bladder was full of Hunner’s ulcers.

I was sick of medical ‘cures’ at that point, and I had been doing a lot of reading about diet and its relationship to cancer.  I started taking on radical diet changes to deal with the IC non-medically.  I was in so much pain on a regular basis that I would make plans with my husband (then my boyfriend), whom I had only been dating a short while at the time, and I would end up canceling just to lie in bed curled up and moaning.  I cut out nearly all sources of obvious acid in my diet, including vinegars, citrus fruits, tomatoes, and most meat.  I improved somewhat, but not enough to function well. I was skeptical about the benefits of any medical interventions, though.

Frustrated over how the pain was affecting my sex life, primarily, and also with my difficulty in working full days regularly without pain, I went to a new urologist in Atlanta who put me on a large dose of Hydroxyzine, an old-school antihistamine.  It made me thoroughly exhausted until my body developed some tolerance to it, but it did decrease my pain, over the course of a year, by 60-70 percent.

About the same time I first saw that urologist, my husband and I attended an art retreat with some congregants from our church.  The first day, we struck up a conversation with an enterologist from church who admired our photography.  The next morning, the enterologist walked up to me and said, “I bet you have—” and proceeded to list off a variety of symptoms, many of them the same as the ones I’ve discussed in this post.  My eyes grew wide.

“Yes,” I said, a bit uncomfortably. “I do actually have those symptoms. How did you know that?”

“You have gluten intolerance,” he replied. “I can tell by looking at you.”

Over the next couple of days, my husband and I had a couple of in-depth discussions with him about gluten intolerance—the usual celiac disease and broader types, which he terms ‘atypical celiac disease’—while we worked on art and ate our meals.  Honestly, the whole idea was so new to me that much of what he had to say about gliadin and went straight over my head.  When we got home, I decided to try to go on a gluten-free diet.  I managed it for several days, but I didn’t feel any better; I may have actually felt worse.  And dealing with the gluten restriction on top of my other food restrictions within our careful food budget seemed unmanageable.  Despite the doctor from church telling me I shouldn’t rely on the simple blood test from a basic doctor’s office, I went to have the blood test done anyway.  When it came back negative, I chose to believe it, despite several other doctors, nurse practitioners, and nurses telling me that the test provides too many false negatives to be worthwhile for many people.

With the improvements from the Hydroxyzine, I was able to tolerate a bit more acid in fruits and vegetables.  That was a major gift for my life.  Things were rolling along. . . .

Then a year and a half ago, my husband was hit by a car while he was in a crosswalk.  It was the worst moment-by-moment scare of my life.  We had been married six months, and when I first got to the ER, I was terrified he was going to die. The first thing I’d been told in the ER was that people with his type of accident often didn’t survive.  We were in a Level I trauma center for 10 days dealing with his enormous injuries from that; then we went home to start the PT process.

A couple of weeks after my husband’s accident, I started getting headaches that wouldn’t go away no matter what I took.  My headache would start by 9 a.m. and would continue on throughout the day.  My PCP checked me out and said that neurologically, I was fine.  Then I developed an acne-like rash on my neck and back. My PCP sent me to a dermatologist, who told me, after various tests, that he didn’t know why I had the rash and couldn’t really help me.

I started researching these things on my own (gotta love Google) and talking to various friends and family members about what was going on with me. I was worried I was going to be debilitated by my headaches long-term. Eventually, I got a skin test for allergies, including food allergies, based on my rash.  The test came back positive for many allergies but only mildly for food allergies.  But I had read about the blood test for food allergies at that point, and though that doctor (who, honestly, seemed like a total nut in a variety of ways) refused to do the blood testing, I sought out another doctor who would.  She tested me for regular food allergies (iGe-mediated) and latent food allergies (iGg-mediated) because I thought my symptoms fit latent food allergies.  And sure enough, I came back with positive low-level reactions to nearly every food (all but two, actually, out of about 30 foods), and with more severe, latent reactions to several foods–the food I now avoid entirely: eggs, soy, dairy, and gluten.

I cut those foods out of my diet and my headaches ceased within two weeks. My skin began to clear up for the first time since puberty. (Who would’ve guessed food allergies and/or celiac had made me break out?) My bladder ached less, and eventually I was able to add back all of the acidic foods I had previously eschewed. Even though I was going through an emotionally difficult adjustment to the restrictions, my overall sense of depression and malaise eased. I was amazed.

In the meantime, while researching people having multiple food allergies, I came across the information, repeatedly, that people who have a variety of food allergies tend to have leaky gut syndrome, often caused by celiac disease.  And I came across the information that people who have celiac disease (and possibly also people who have food allergies in general) can have an emotional or physical trauma wake up their body to create much more severe symptoms.  They may have been having the issues mostly silently, but the body suddenly sends out major signals in the wake of the trauma.  My husband’s accident was that trauma for me.

I emailed the doctor from church for a brief refresher course, and he told me to use the poo test at Enterolab to get tested for intolerance to both gluten and casein (since casein is very similar to gluten chemically).

I was scared to get the celiac test, because I felt like I knew what the results would be, and I knew once I had those results, my life would change for good.  On the other hand, I was planning to start sublingual immunotherapy drops for the food allergies, and I knew I couldn’t do that in good conscience without knowing whether the doctor should include gluten and dairy in the drops.  I had already cut gluten and dairy from my diet, but one benefit of the poo test is that it doesn’t require that the subject be eating gluten and casein.  I decided to do the poo and genetic testing; I wanted more information, and I was curious whether the gluten intolerance was something that others in my family might have. (Let’s just say I’m not the only one with gastrointestinal issues.)   The test came back positive both genetically and symptomatically—not for typical celiac disease but for an atypical kind of it, a kind of gluten intolerance that was attacking my body somewhere.  Interestingly, I got the genetic code for the gluten intolerance from both of my parents, so chances are high that others in my immediate family also have the intolerance.  The doctor from church had told me it is often affecting the bones of people who have it and don’t know; it tends to emerge as osteoporosis later in life.  For children and adults whose brains are being damaged by the gluten and casein, the effects can be seen as emotional disturbances.  Some women’s bodies react to the gluten and casein by creating an infertile environment for either conception or gestation.  In my case, I feel certain that my colon is affected by it; probably other parts of me are, as well.

I’m still growing and learning; I’m not entirely healed from all my medical problems, as my blog readily shows.  My acupuncturist has talked to me about my body needing to reach a place where it isn’t easily inflamed into allergies and other ailments overall.  I’m still working toward the holistic, overall, high level of health that I want to maintain for the rest of my life.  But it has been an enormously positive and life-changing thing to know that these foods were affecting me so badly and to cut them out of my life.  In many ways, I feel better than I ever remember feeling.  If my sublingual immunotherapy drops mean I eventually regain some of what I now cannot have, that will be wonderful; if not, I am okay as I am.  If I had tried to force myself to remove these foods from my diet earlier in life, I would have struggled against the constraints.  Now, though, as a form of self-care, avoiding certain foods is usually a fairly simple act that offers me great rewards in return.

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16 responses so far ↓

  • 1 Cheryl // Aug 4, 2008 at 6:34 pm

    Your posts are always so descriptive, passionate and real. Thanks for your openness in sharing!

  • 2 Meghan // Aug 4, 2008 at 7:30 pm

    Wow – I just totally devoured every word you wrote (um…no pun intended?). It really is incredibly helpful to be able to read about your experiences. I’m gluten free but not diagnosed. I think you’re in the Seattle area, right? If so I’d love some recommendations of health care providers that you like and trust.
    Thanks again!

  • 3 gaile // Aug 4, 2008 at 8:26 pm

    This was such an excellent post! I caught myself nodding along in so many places. Our journeys are all unique, and yet it often surprises me when I hear other people’s story, how we share so much in common. Thank you for posting this. I know that it will help others as they come along on their own journeys and are searching for answers .

  • 4 Alana@A Kiss, A Hug, and A Squeeze // Aug 4, 2008 at 8:51 pm

    Hello! I wanted to stop in to say “hi” and thanks for the comment you left on my blog awhile back. I have been hosting company and this is the first time I have had to visit your blog. Your blog looks really intriguing…I’m going to have to look around a little more. Nice to “meet” you!

  • 5 nikibeanster // Aug 4, 2008 at 10:12 pm

    Ah yes, Celiac. My boyfriend has been wheat and dairyless for 7 years. Check out Azna bakery in Cali- they’re great. I have some understanding of what you’re dealing with. I don’t know if goat cheese works for you (haven’t delved deep into your blog yet because of nursing school), but that seems to work for my honey, who has the same gluten and casein intolerance. 🙂

  • 6 Kristen // Aug 5, 2008 at 7:10 am

    wow, that was incredibly interesting. my husband has been trying to figure out what other foods may be affecting him (aside from the gluten).

  • 7 Lorelei // Aug 5, 2008 at 11:56 am

    “If I had tried to force myself to remove these foods from my diet earlier in life, I would have struggled against the constraints.”

    This is where I have been for a long time, so bitter about what I can’t have that I can’t be happy with what I can have. Reading your blog has really helped me to be more accepting of my situation, more aware of it being self-care, than restrictions. Thank you for that and I know my husband thanks you for my improved attitude towards food.

  • 8 Tony // Aug 6, 2008 at 12:49 am

    great post. I was never aware of these type of food allergy diseases. Thanks for enlightening me.

  • 9 Kay // Aug 6, 2008 at 6:06 am

    Great post!

    Thank God for Google, indeed! I would never have had a clue about food intolerances and allergies without the internet. I just wish I’d had a doctor who knew how to Google.

    I was really mad after I paid $106 for exactly six minutes of one doctor’s time. He told me my symptoms would probably always be a mystery and prescribed steroids. It took me another year just to get over the damage the steroids did. Sheesh!

  • 10 Lizzie // Aug 6, 2008 at 8:42 am

    Thank you for sharing that Sally. I can relate to so much of that post. After a blood test and colonoscopy to test for celiac disease with negative results, my doctor prescribed me prilosec and sent me on my way. I turned to Enterolab and had the same results as you — and my sister did as well.

    If only there were more doctors out there like the one from your church…

  • 11 Cindy // Aug 7, 2008 at 9:48 am

    Sally, your story made me cry. Honestly, that was the most touching, depressing, but also uplifting story I have read in quite awhile. I am always saddened that it seems like most to all gluten intolerant/Celiacs go through such similar misery and turmoil, but I am glad many have come out stronger for it- like you! I love your site and when I lose hope or feel overwhelmed, I look at how others have similar ups and downs. We are all here with you, in spirit if nothing else. I am so glad I am getting to know you better! Thanks!
    (I love your recipes too 🙂 )

    My family still doesn’t *believe* me and wants me to constantly camp in a doctor’s office, but I’m tired of invasive and painful tests with no relief. I am worried more that my sister and father have it too, in some form, and are ignoring it. I feel so hopeless in that matter, but for now I guess we just do our thing and live by example, healing along the way.

  • 12 Amy // Aug 7, 2008 at 5:39 pm

    I am enjoying your blog and your photos!
    Thank you for commenting on mine, and I’ll look into your recipes. I’m adding you to my links section.

  • 13 John // Sep 5, 2008 at 3:40 am

    This is a very helpful post for me because My niece is still suffering from ovarian Cancer she had
    after suffering from Stomach cancer.Thanks for such a useful post about ovarian cancer.

  • 14 queen // Nov 26, 2008 at 5:55 am

    my hubbt had kee surgery in feb and ever since them he has bee having horrible breakouts all over his body. he is constantly itching and scratching now. we did a blood test and it came back high in dairy, casein, and eggs. we r so confused he is 29 and this is the first time it’s ever been a problem. dr’s really havent helped. we have avoided those things but he still breaks out. do u think it could be wheat even tho he scored negative on that? please help.

  • 15 Kat Aarts // Nov 8, 2009 at 3:49 am

    Cheers for a great post, very instructive. Ditto the feelings of frustration with medical practitioners. I have been diagnosed with interstitial cystitis (I also suffered from Hunner’s ulcers) which had reduced me to flat sensible shoes, no jogging, burning urination and complete misery. After a complete fuck-up of a urologist suggested “dilating” my urethra (I flatly refused, the plumbing is fine, the trigone is not) I sought advice from a naturopath and Google. No gluten, no pain. It was like turning off a switch. Within three days I could jump up and down. I cried with relief.
    As my beloved GP had retired I sought testing, to be told by some arrogant arse with certificate on his wall that I could no longer be tested for gluten intolerance as I had already removed it from my diet. Thankyou for the Enterolab info as I now know there are other options for testing. Word to Doctors: LEARN HOW TO GOOGLE!!!!!!

  • 16 Amy // Feb 8, 2011 at 12:06 pm

    I had the IgG blood test about 6 months ago and it came back with multiple food allergies. I am supposed to be doing an elimination diet, but I have found it to be really really really tough. We just removed dairy from my kids diet for multiple reason and have noticed major differences and they are only 2 and 3. Dairy is one of the things that showed up on my blood test and one thing that I know i have issues with. Gluten is another one, but I am finding it so hard to give up. One day, I will be able to eliminate these foods and hopefully feel better all around!

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