Persisting Thoughts from a Severe Celiac

Dr. Kirsten Froese-Loewen is a Celiac, member of Calgary Chapter, and practicing Optometrist in Calgary. I recently came across her submission to the Calgary newsletter and found it full so many interesting nuggets of information that I felt compelled to seek her permission to share it here, which she has kindly agreed.

I have been compelled to write for 3 years now, ever since Randi-Lee Rider’s article “Being Celiac in Ireland & Scotland” (first edition 2008). Unfortunately, I have been too unwell to write until now. This is a mish-mash of ideas and learnings that I hope will help and entertain.

The last several issues of our Calgary Celiac News have contained some great articles about those who struggle to heal and control their celiac disease (CD). As someone who also struggles to manage this condition, even 10 years post-diagnosis, I find related articles affirming. It is also nice to see some recipes that acknowledge the common dairy and egg allergies that often accompany CD. Thank you Calgary Celiac News!

When the EZ Gluten strips first came out, I mistakenly gave them no value. I thought to myself, “As someone who classically reacts to less than 5 ppm, these strips will be useless for me if they can only test to 5-10 ppm”. Well, was I wrong. These strips have saved my life, perhaps literally. Over the last few years, I have tested 59 foods (~$1,000 worth of strips) with the following results: 41 negative, 17 positive, and 1 inconclusive. These strips allow you to discover the source of your “gluten poisoning” immediately, to prevent subsequent ingestions. They allow you to test prior to trying a new food, to prevent illness. They allow you to be confident with others around you – “it’s not in my head, see!”

They give you confidence to send a food to the Canadian Food Inspection Agency (CFIA). They show you that foods that you were suspicious of are safe. They allow you to test items that are not yet regulated (eg. supplements). These strips aren’t cheap ($16 each) but they are absolutely worth it. They have helped me discover the source of my suffering in all sorts of unexpected items with “gluten-free” claims – supposedly pure “gf” spices (6 different ones!), “gf” brown rice tortillas, rice vinegar, apple cider vinegar, packaged Indian food, custom sausages, tooth sensitivity gel, non-dairy cheddar cheese, and other foods that were previously safe but are now contaminated. (Perhaps hard economic times have triggered unethical companies to “fill” their spices and products). You are welcome to contact me for a copy of the foods that I’ve tested and my notes on how to interpret the strips.

In the event of a gluten poisoning, these charcoal underwear inserts are a saviour. Don’t laugh. They also are not cheap ($15 each) but they are well worth the money. They cut out about 80-90% of the odour. Get the disposable version, don’t tape them in (so you can use both sides), then discard.

While we’re on humorous topics, it is easy to recall “risky situations” you’ve been in that you would not have predicted at the time of your diagnosis: airborne beer on the dance floor, airborne soy sauce at the sushi restaurant, and a 3-foot baguette being torn then literally thrown to the next person at a table of ten. Then there’s being afraid to kiss your partner for fear of gluten on their lips. Never eating food that falls onto the counter, stove top, or table. Not lifting other’s food items over your plate. And, when white powdery stuff is on the conveyor belt at the grocery store, you leave your items in your basket (making the clerk mad and forcing you to explain yourself, again). Or, you pile your groceries high on top of one another, so only the bottom one touches the conveyor belt.

The odd day I feel sorry for myself, but every day I feel sorry for my husband.

Kimball Genetics, based in Denver, offers a neat celiac genetic saliva test that runs ~ $450 USD. This company is unique in that it not only tests whether you have the DQ2 or DQ8 genes, but it also tests how many copies of each gene you have (0, 1, 0r 2), and how many of each alpha and beta subunits. Apparently, the DQ2 gene confers more risk and severe illness (vs. the DQ8), especially if you have a double set of genes (ie. one from each parent).

Also, the beta subunit confers more risk and severity (vs. the alpha subunit). For example, reflecting my severity, I was found to have a double set of the DQ2 genes with a double set of beta subunits, and one set of the alpha subunit. This test has brought peace and understanding to my past, present, and future. Dr. Rashid’s recent article explaining that European researchers have found another 39 genes that play a role in CD (with 26 having a strong association) is pretty exciting. Perhaps there are different genetic subsets of CD with differing levels of sensitivity. Perhaps, one of these subsets will be those 10% of celiacs who are negative by tTG or EMA blood screening tests, yet have positive biopsy findings and are highly sensitive (like myself).

Thyroid Disease: When you are diagnosed with CD, you read about how you should regularly monitor for thyroid disease. Well, it’s true. TSH (thyroid stimulating hormone) is a common screening test for thyroid disease. Our Calgary Laboratory Services uses 6 as the hypothyroid cut-off for TSH (ie. if your TSH is over 6, you are considered hypothyroid). However, many other mainstream medicine labs in North America use 3 as the hypothyroid cut-off (ie. if your TSH is over 3, you may be considered hypothyroid). My experience, at a TSH of 5.91 (“normal” for Calgary Laboratory Services, but abnormal in other jurisdictions), is that I am nearly fully disabled without thyroid treatment. Know the thyroid symptoms to watch out for, test your TSH regularly, know your exact TSH value, and experiment with treatment if it is greater than 3.

Serotonin Deficiency: Many of us experience post-poisoning depression. One published medical article showed that those with active CD can have up to 90% reduced serotonin levels. Apparently, when there is gut inflammation and cramping, serotonin is used by the gut, leaving little for the nervous system. Prescription tryptophan has always remedied my CD-induced mood change within a week of aggressive treatment. Recently, I performed neurotransmitter testing (after an inadvertent gluten ingestion) which showed drastically reduced serotonin and serotonin metabolite levels. I find tryptophan more effective than 5-HTP, but some find the opposite.

Sleep: I often feel super “jacked up” in the days to weeks following a poisoning, so much that the first night of a poisoning I cannot sleep one wink. One doctor wisely purported this may be due to the adrenal glands secreting an abundance of cortisol (and adrenaline?) in attempt to control the autoimmune inflammation.

Low Back Issues: The gut is located right up against the spine. For some of us, the massive autoimmune gut inflammation causes low back inflammation (pain) and slipperiness (subluxation). Our low backs can only be well when our gut is 100%.

Asthma: Also, be on the lookout for post-poisoning asthma.

Monique Chambefort, RD wrote a great, informative article titled “Gluten-Free; but Still Not Well?” in our June/10 edition. If I may, I’d like to add some other ideas to look into for those who are not healing:

IgG testing: For those who cannot find perfect health within 6 months after diagnosis, performing IgG antibody testing for delayed food allergies can be incredibly helpful. These IgG immune reactions are super common, especially in those with gut ailments and autoimmunity. This testing has literally saved me and many of my optometric patients with chronic ocular and systemic disorders. (I have not found IgA, IgM, or IgE testing near as clinically applicable as IgG testing). The most common IgG findings are immune reactions to dairy and egg (not soy). This test runs ~ $300, but is invaluable information for the rest of your life.

IgG antibody burnout: If you perform the IgG testing while you still have active CD or while you are still healing, you may be so immunologically compromised that you are unable to produce IgG antibodies at meaningful levels, thereby giving false negative IgG results. It is best to wait until after 6 months on a strict gluten-free diet before doing IgG testing, otherwise your results can be “flat-lined”.

ALCAT test: If the IgG-directed diet does not completely heal you within another 6 months, the ALCAT test is also helpful. It measures the white blood cell/innate immune system’s reaction to various foods (vs. the specific, antibody-producing immune system). This ALCAT test is expensive (~$800+, depending on how many foods you test), but is another lifesaver.

Gut fungal overgrowth: I have learned that my gut will simply not restore itself postpoisoning
until I take a round of natural antifungal supplements.

IBS: Some health care practitioners believe IBS does not exist as a primary condition, but as a secondary condition due to a yet-to-be-diagnosed condition such as: traces of gluten, other food allergies or sensitivities, dysbiosis, or other. This is certainly my experience, along with others. I have encountered many who have healed their “IBS” with additional testing (as above), learning, and experimenting.

20 PPM
In the recent edition of our Canadian Celiac Association’s (CCA) “Celiac News” was a well written article, “Reviewing the Definition of Gluten-Free”. It discusses how today’s testing can detect 3-5 ppm (vs. the 20 ppm limit of the past). It discusses three issues: the need to minimize risk of gluten ingestion vs. maximizing selection of safe foods, and supplying foods at a reasonable cost. The article outlines how gluten-free is defined as < 20 ppm, that the CCA agrees this level is safe, and how the CCA is recommending Health Canada adopt < 20 ppm in the final product as being safe. Near the end it explains, “The consumer will need to be educated that < 20 ppm is gluten-free and safe for individuals with celiac disease”. Based on my experience, I feel it is presumptuous to assume NO celiacs will react to less than 20 ppm and that they simply need to be educated of this. This article does not acknowledge the wide spectrum of sensitivity and how there are some of us who are clinically ill, every time, with mere traces of gluten. I continued to be ill an additional 5 years post-diagnosis, until I realized I could not consume any of the controversial “allowed” items and many titled “gluten-free” foods. I would do anything to get these 5 years back, for I suffered irreversible secondary illnesses in these years. Are there others out there who also cannot tolerate 20 ppm?

I understand that science proves 20 ppm does not cause intestinal damage in the majority of us. But we also know it is likely that each individual has a different ppm level at which the autoimmune process is activated. Then what level should be chosen as acceptable for all? Safety must come first and newly diagnosed celiacs, especially, need to be educated that they may, or may not, be well using the 20 ppm limit.

It took me 5 years post-diagnosis to also realize that I was having classic reactions to gluten-derived distilled products (eg. white vinegar, grain alcohol). There are also other local celiacs who are well aware that they have overt celiac reactions to these grain-derived distilled products. (These are not alcohol or acidic “leaky gut” reactions – they are classic CD reactions with all the pathognomic symptoms and timelines). Perhaps it is because these items contain gluten levels below our testing detection limit. Perhaps it is because some fragment of the gluten molecule gets through the distillation process and is able to initiate the autoimmune process in some individuals. Again, are there others out there who also cannot tolerate these distilled products?

The reason both the 20 ppm and the distilled product issues are of concern is:

1. If autoimmune damage is occurring in the most sensitive, it is possible it may also be unknowingly occurring in the less sensitive. This is especially an issue for children, who may not be as aware of their bodies.

2. If 5 out of 7 celiacs (~ 70%) do NOT have gut symptoms to guide them, then this huge portion of the population may be at risk for continued autoimmunity and secondary conditions.

3. If the risk of cancer is 10% in untreated celiacs, it is possible consuming foods with low-level gluten and consuming distilled products may increase this cancer risk, whether individuals are symptomatic or not.

4. Many celiacs who do not symptomatically get well are diagnosed with refractive CD or overlying IBS and are left to live with their condition, when really it may be due to ingestion of residual gluten and distilled products.

5. In all these scenarios, there is potential to consume huge health care resources and dollars.

Back to the initiator of my writing, Randi-Lee Rider’s great article about government subsidies for celiacs in Ireland & Scotland. For those with severe CD, it is disheartening that there is no tax credit (besides the incremental cost of gluten-free food, above $1,500/yr or 3% of your income) due to:

1. The time it takes to cook every meal for yourself,
2. The effort to do this,
3. The cost involved, and
4. The fact that you may still be ill for chunks of time, despite your best efforts.

With such severe CD (along with dairy and egg allergies) there are only a handful of “gluten-free” items I can consume (ie. that I haven’t been “burned by”). Thus, I have zero incremental allowance to claim at the end of the year. Then, because then you get diagnosed with overlying IBS, you are forced to see expensive alternative docs (ND’s, MD’s, homeopaths) and do expensive alternative testing (IgG, ALCAT, saliva hormones) to save yourself. Then, add in the cost of strange products (EZ Gluten Strips, Flat-D Liners) to manage your condition. I agree with Randi that severe forms of this condition deserve some form of a tax credit.

I know there are other celiacs who are as sensitive as I. I know I am not alone, but I sure feel alone. You try not to dwell on the pathetic effort it takes to control an autoimmune disease that is triggered by to-the-trace amounts of perhaps the most ubiquitous and versatile ingredient on the planet. I can embrace this reality, but what is difficult to embrace is when science and policy do not support your repeated experience. How rare are us sensitive folks – 1 in 300, 1 in 100, 1 in 10? It is imperative to know so that we may educate health care providers, policy makers, and fellow celiacs of this statistic. If anyone feels as frustrated and alone as I do, and you’d like this statistic known, gosh.

I’d love to hear from you.

Most respectfully,
Dr. Kirsten Froese-Loewen, OD
Member of the Calgary Celiac Chapter


About David E. Fowler

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One thought on “Persisting Thoughts from a Severe Celiac

  1. You are not alone. There is a whole forum devoted to us. See and click on the forum section. We share tactics for avoiding gluten and test results for these expensive tests.

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