Forced to Choose: A Father’s Battle Between Gluten-Free and Feeding His Family

I am celiac since age 50, but reared a celiac son diagnosed age 2 in 1978. There was no gluten-free bread then, and overall food labeling was incomplete. The upside was that all our kids ate only unprocessed foods, and my grocery bill was lower than it had been. Some good pointers:  bread is not essential. There are healthy carbs with no extra gluten-free cost: potatoes, sweet potatoes, rice, Thai rice noodles etc. Best if luck, but please eat gluten-free. Your family needs you healthy. 

While I agree with Helen, in principle, not everyone has the time OR the ability due to life demands or disability/current health issues, to make everything from scratch.

I didn’t receive my Celiac diagnosis until age 53, and that wasn’t for lack of trying on my part. But I immediately went on the gluten-free diet, and saw a great improvement in my overall health.

Now I’m 70, my husband died 12 years ago, I’m permanent disabled from a complex genetic connective tissue disorder (which also has many secondary disorders), none of which most doctors are familiar with. My disorder has no treatment or cure and is progressive/degenerative, and it causes intense body-wide pain that never goes away. I live alone and additionally was recently diagnosed with a very rare form of leukemia. I STILL try to make most of what I eat from scratch, but lately it’s become next to impossible given that some days I can barely get out of bed. Gluten free bread - for a brand that actually tastes good - can cost as much as $8 here in the United States. You can talk all day about it being not the healthiest choice, but when you’re as sick as I am it’s important to just make sure I’m eating SOMETHING. This country could not care less whether I can afford food or not, much less if I’m able to cook for myself.

I never received any guidance on the gluten-free diet; nutritional consultants are not covered under most insurance (and I have GOOD insurance coverage, actually triple coverage) unless you have diabetes. Everyone else must simply “figure it out.” I was lucky that my grown daughter assisted me with that, because she had put her son on the gluten-free diet.

While the wealthy in America can hire their own chefs, and the poor have many benefits through Medicaid that others without do not, the rest of us are pushed aside and forgotten.

In my (humble) opinion, that’s beyond shameful in a country as wealthy as the United States. I’m on a fixed income but was not left destitute when my husband died. Yet it’s still difficult for me to afford the foods NECESSARY for me due to Celiac. And if it’s hard for me, it must be impossible for those who are poor, and I find that disgusting.

I don't understand how this is such a problem.   I've had acute celiac since 1955, so believe me, I know how it feels to be poisoned - & to sit at a table hungry, while others are enjoying their meal.

I don't need bread.   I don't need specialty packaged foods.   Rice & potatoes fill a person up just fine, & are inexpensive...  There are many other gluten-free starches as well, corn, quinoa, oats, etc. 

I eat protein, veg, fruit, dairy, starches - Have little need for packaged foods.

I am very healthy, & very satisfied with my diet.   I do not feel at all deprived.  Inconvenienced at times, but honestly, I eat very well.

I was diagnosed in December 1980, and have been on a very strict gluten-free diet since. I was seriously ill, was hospitaised, and almost died. At its worst, I described the pain as being eaten from the inside by malevolent rats. I would literally starve rather than eat a slice of non gluten-free bread. I have a Mediterranean diet, sans bread, and am a very fit and slim 71 year old, albiet 25kg heavier than in 1980. Good luck to all, and take care.

22 hours ago, OldNavyWife54 said:

none of which most doctors are familiar with

Dear @OldNavyWife54,

     It seems to me that when the doctors are stumped it turns out to be a nutrient deficiency.  Some due to Celiac Disease Malabsorption, which as you are eating gluten free shouldn't be an issue, but others due to bad advice.

    I'm 73.  My son was diagnosed as an infant in 1976 and his doctor recommended gluten free for my wife and I.  But, as was a common belief, we thought Celiac was a gastrointestinal problem and we had no (or so we thought) problem there.

     My wife died in 2005.  From 2010 I could not stand for more than a few minutes.  2012 I had gout and started prednisone for it.  After the 10 days and the treatment ended, I noticed that that week I had been getting up and about more.  So I was taking 30 mg a day and feeling better.  Thanksgiving 2014 I started GFD and had great improvement.  I was able to reduce the prednison to 5 mg a day, but by then I had Secondary Adrenal Cortex Insufficiency, a result of long term prednisone. But I would do it again.

     I had stopped getting worse, but wasn't improving.  Started 10,000 IU of vitamin D and shortly after my depression went away.  I knew I was not getting enough Iodine because I wasnt healing, but those warnings scared me off.   By 2019 I was quantataively tracking vitamins and discovered, though I was eating healthy foods, I simply was not getting enough vitamins.  To keep it short, after going over my wife and mine history, we were both Celiac and that is why my son was diagnose at weaning.  Daily Nutrient Totals

These are not medications, they are the essential nutrients that we need to get in our food based on RDA estabished by the National Nutrition Board, but don't.  

Here is what I still need to take.

Additional likely deficiencies and what I take to boost my intake (I get anorexic at the drop of a hat so I take them to keep me stable):  the ones that helped me the most noticibly Was increasing vitamin D blood level to 80 ng/ml and Iodine to 1650 mcg a day, Thiamine, Choline, and Iodine.

10,000 IU vitamin D to control autoimmune, improve mood, especially the winter doldrums (Seasonal Affective Disorder), bone and dental health.   Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

500 mg Thiamine - neurologic symptoms, carbohydrate metabolism, subclinical beri-beri.

Choline – Adequate intake 500 to 3000 mg - essential for fat digestion, gall bladder, liver, brain fog, cell membranes, prevent congenital spinal defects.   Could we be overlooking a potential choline crisis in the United Kingdom?

Iodine – Now I am at around 1600 mg of Liquid Iodine from PipingRock.com.  United States RDA 150 to 1100 microgram (mcg) Japan RDA 150 to 3000 mcg. speeds up healing, muscle tone, brain fog, hair and skin, thyroid. 10 drops of Strong Iodine has 500 micrograms of elemental Iodine. Nori and Kelp. For some people with Dermetitis Herpetiformus, iodine can exasperate the rash.  Remember when we were so concerned that Japanese school children surpassed our children?

Iodine for Hormonal Health "Your ovaries also need iodine and without enough their structure changes. Iodine-deficient women can produce ovarian cysts and are at risk of developing PCOS."

Vitamin B2 helps break down proteins, fats, and carbohydrates. It plays a vital role in maintaining the body's energy supply. 

500 mg Nicotinic Acid B3- increase capillary blood flow, lower cholesterol.  Niacin Fact Sheet for Health Professionals

500 mg Pantothenic Acid - creates energy from glucose Krebs Cycle

1000 mcg B12 - creates hemoglobin for oxygen transport

500 mg Taurine - essential amino acid, a powerful antioxident that we make indogenously, but not enough when sickness increases inflammation. reduces Reactive Oxygen Species (ROS are are free radicals.).

I've been using Zinc Glyconate (Cold-Eeze) since 2004 anytime I feel an itchy throat or other sign of air borne virus coming on.  I haven't had cold or flue, including Covid 19, since.

Naturally fermented dill pickles reestablished lactobacillus in my gut and reversed my recently acquired lactose intolerance.  100% grass fed dairy is less inflammatory. Milk is a good source of iodine.

Omega-3 and Omega-6 Fatty Acids  Foods low in omega six and high omega 3 can reduce inflammation while increasing vitamin and mineral intake..  The target omega 6:3 ratio is less than 3:1.  The typical western diet is from 14:1 to 20:1 because of our food choices.  Wheat is 22:1, Sweet Potatoes is 14:1 and white potatoes are 3:1.  Yet we are urged to choose sweet potato as healthier?

Iodine was elimated from medicine in the 50's because of the Wollf-Chaikoff Effect a single study in 1948 at Berkeley whose ulterior purpose was for national security.  And removed from bread in the US in the 70's.  Since then the intake in the US population dropped 50% and prescriptions of thyroxine has doubled.  Whole-genome sequencing of early MRSA isolates suggests that MRSA may have emerged in the mid-1940s Oops, that right around the time our government was removing iodine.  It seems to have gotten really bad when the took the iodine out of Phisohex.

Vitamin D was banned by the UK in the 50's due to a baby formula error causing an epidemic of deaths.  The rest of the world followed suite.  Mayo Clinic Procedings: Vitamin D Is Not as Toxic as Was Once Thought: A Historical and an Up-to-Date Perspective

Choline is mostly gotten through eggs and liver and meat.  We were adviced to avoid because of cholesterol.  Doesn't seem to have helped.  Choline - The Most Important Nutrient of the Body

Unfortunately, in my case shopping Gluten-Free isn't an all-in-one experience, I have to shop at several stores to get the products I require especially Table Crackers (saltines) cookies, Hamburger & Hot Dog Buns.  And now, lesser choices exist because O'Doughs has a policy of shipping their baked goods fresh to stores, I'm assuming by the time it arrives in Florida's climate that wouldn't be the case and Publix, which is the only store that sold them, has a clearance on all their products.  I buy Udi's Bread at target for $5.99 per loaf ($5.69 with Target Circle Card, offering a 5% discount), while the same loaf costs $9.49 at Publix.  Currently Publix sells Udi's Hamburger Buns, but not the Hot Dog Buns (I suggested they do because there aren't any options left). Winn-Dixie & Whole Foods sell them.  No wonder some people aren't buying Gluten-Free Bread!

Yes, gluten-free bread is harder to make and its flour are getting more expensive, and bread without gluten does not have the lasting power of regular bread.  But bread is not the only staff of life!  Reared a celiac kid from age 2 many years ago without bread.  Discover corn tortillas. Hamburgers:  do a lettuce wrap, tasty and healthier.  Hot dogs - eat them without the bun, just like a sausage - or not, many folks go their whole lives without ever eating a hot dog.  Giving up bread is tough (for my kid, he has never tasted actual French sourdough, so no loss there), but it does not have to mean miserable meals.

As sick as I was at the time of my diagnosis, I would be happier eating potato and cabbage soup for the rest of my life, rather than anything with gluten. I think this article reflects the fallacy that all the items one is used to eating must be replaced with gluten-free versions. This can be a lot more expensive indeed, however, the better choice is to learn how to cook and switch to whole foods--meats, vegetables, fruits, nuts, seeds, roots, etc.