Endoscopy: Diagnostic Gold or Impossible Standard?

A lot of folks discover that they have Celiac disease when the doctor proposes an endoscopy to explore the possibilities for their ailments. This is a good practice.

However, some people come to the knowledge that they cannot tolerate gluten because they went on a gluten free diet, either as part of the fad, or because they were ill and were told, either by medical professionals, by friends, or by doing their own research, to cut out gluten, then add it back in.

The main suggestion is that if you eliminate gluten, then add it back in, that you have an issue with gluten, but are to continue eating it until you have the endoscopy and/or blood tests done.

If you have been without gluten for a long time, you must subject yourself to weeks upon weeks of an agonizing gluten challenge in order to get accurate results.

My question is WHY?!

First of all, the gluten free treatment for Celiac Disease was discovered when the Netherlands experienced a shortage of bread in the 1950s. Children being treated for Celiac Disease improved. When aid came, and bread was able to be redistributed, the children that were being cared for began to decline, again. (A Brief History of Celiac)

If one of the major breakthroughs in this disease was the elimination of wheat products, why can that not be part of the diagnosis?

Secondly, isn't it against the Hippocratic Oath, not to mention, unethical, to induce disease that could bring about harm? There are instances when this is necessary, where symptoms need to be recreated so that the doctor can gather information about the details of the illness. In the case of Celiac Sprue, however, might a food diary assist?

When a diabetic presents with illness, the test is done, and the treatment is immediately given. The same is true of peanut allergy patients and Lupus patients and cancer patients. Celiac disease may not be the only disease where treatment isn't immediately forthcoming, but when a patient presents with symptoms, there is a lot of "hem and haw" going on.

Some patients are told that their being overweight rules out Celiac disease from the get-go. This is patently untrue! Obesity is one of the SIGNS of celiac disease! If that wasn't embarrassing enough, they must undergo a test for which they must undress, be sedated, and have their nether-parts exposed to near strangers, to rule out other diseases. ...And we're told this is the "gold standard."

I hope doctors and the medical field, overall, consider the human cost. It would be great for many of us to have a diagnosis, so we can have a record in our charts, wear medical alert bracelets, if necessary, and be taken seriously, as well as monitor our disease progress so that we can know if we're experiencing low-level poisoning and determine whether our health is actually improving. Many of us can't afford to take 3 months off work to allow for the symptoms that will inevitably come.

Wouldn't a better benchmark be the genetic markers? You can't have the disease without the gene or genes, and while intestinal recovery can come and go and relocate, the genes never move. They will always be present to be identified. Besides, there is a less likely chance of getting this one wrong. The tests are very accurate, and if in doubt, a rescreen can be done at any time, without significant harm or distress to the patient.

This test also side-steps the possibility of a patient being unable to produce IgA, which gives a false negative for some celiac patients.

This test, having the ability to be given at any time, can accurately evaluate a patient at any time during their course of recovery. This means that more patients can discover the true nature of their illness, come to acceptance sooner, and be well on their way to healing. And more patients documented as having the illness can allow the scientific body more accurate estimates to the prevalence of this disease within the population.

My recommendation, as a probable candidate for Celiac Disease and graduate of the health sciences, as a better standard for patient care and for the diagnosis of Celiac Disease:

On day of presentation:
1. Patient food and health diary
2. Genetic test, as Gold Standard
3. Nutrient counts in blood tests
4. C-reactive protein and other markers of inflammation in blood
5. Stool samples, to support disease process.

Next steps:
6. Short-term, monitored, journaled, and blood-monitored gluten challenge.

• Several weeks OFF of ALL gluten-containing foods 
• Recommend diet plan 
• Patient is to document all meals 
• Blood work each week or at the end of the GF period 
• Document improvement or lack of on GF diet 
• Challenge with gluten, no more than a week - and blood work checked for markers of inflammation

Regina Gates

Should I Get Tested for Celiac Disease?

My answer is: maybe. Yes, that's giving it to you straight. Without more specifics, that's the best I can do. haha!

Okay, the fact is, only you can decide. There are reasons for and reasons against.

1. Have you stopped eating gluten?

This is probably the biggest barrier to testing. If you have NOT been tested and are still eating gluten, but you've done a very short elimination diet, and you definitely want to be tested, KEEP EATING GLUTEN! Get tested ASAP, so if you test positive, you will know your tests are accurate and you can be well on your way to healing.

If you have stopped and have stopped for a while, more than a couple of weeks, check with your doctor, but you will likely have to go back on gluten before you can be tested and expect good results.

2. Will having a celiac diagnosis increase my insurance, or keep me from getting insurance?

I have no idea. I think the ACA is trying to keep that from happening. An increase may be more likely than prevention from getting insurance.

3. What are the benefits to having a proper diagnosis, complete with endoscopy and colonoscopy?

There are several. For one thing, you can add support to your gluten free lifestyle, and more effectively garner support from family members and medical practitioners who may think you're doing the diet for kicks.

Another is that you'll have a baseline and can monitor your healing and the effectiveness of your dietary habits.

Note: I expect this list to grow in time. Please pardon my dust. :)

What is Blepharitis?

What an odd word..."Blepharitis." It is obviously an inflammation of some sort, which explains the "itis" part. I just don't know what a blephar is...(goes to check this out)

Blepharitis is inflammation of the eyelid, especially related to the oil ducts at the bases of the lashes. It doesn't necessarily create a sty, but can cause a crust to matte the lashes together, resulting in discomfort. The eye can be reddened from the inflammation as well. Read more here: Mayo Clinic - Blepharitis

It is associated with celiac disease, though, not necessarily a direct result of celiac disease.

I have had this affliction on occasion. I always thought it was a childhood or allergy thing that you grew out of or only got on occasion. I have gotten styes before, but they are generally short-lived. I have not noticed a strong correlation with gluten poisoning, in my own case. I'm more inclined to blame the pollen counts.

Have you had blepharitis that was improved by a gluten free diet? Are you on a gluten free diet and have not had improvement in your blepharitis symptoms?

Thanks,

RG

Learning to Cook with Gluten Free Flours

It's an art-form, cooking. It becomes especially so when you are having to change the chemistry of your food. Well, you're not really wanting to change the chemistry, as much as to reproduce the effects of the chemistry in a round-about way.

...Yeah.

You see, gluten free flours are missing the very component that make dough rise and give it structure, gluten. Gluten is an elastic molecule that keeps the dough from breaking as it fills with little air pockets and expands. It's a binder, linking or cross-linking the ingredients in dough together. Yeast breads need lots of gluten, while soft breads like pancakes and biscuits and pie crust don't need as much.

In gluten free foods,  your binder can be xanthan or guar gum or even, to a lesser extent, gelatin. They act differently from each other and from gluten, so learning their behavior is the trick. For instance, too much xanthan gum, and your baked goods will eventually collapse.

To see xanthan gum at work, make yourself a mocha shake without it, take a few sips to get the texture, then add 1/4 teaspoon of xanthan gum, whirl it together, let it stand for a minute or so, then sip it.

What I have done to learn to cook with the gluten free flours is to always start with pancakes when trying a new mixture. I've done pancakes with rice flour blend (RFB) only, RFB + brown rice flour, buckwheat, RFB + buckwheat, RFB + millet, RFB + sorghum, RFB + sorghum + millet, RFB + sorghum + ground flax.

My latest endeavor is a good biscuit. I've not been happy with the numerous ingredients in the ones I've found online, or the fact that many call for a specific brand's mix. I want to make my own, and save a few bucks, thanks.

So, I continue to experiment. As far as biscuits are concerned, I've used GF Bisquick a couple of times, now, and like the texture, but the sweet flavor leaves something to be desired. To have a "meal biscuit" you need to add enough salt to overcome the heavy-handed addition of sugar in the original mix. Since I was running out of the mix when I made these cheddar biscuits, I learned a few things about how to make GF biscuits!

Next time, I'll try them from scratch!