Important News on Celiac

For those of you who may not know, I am the mother of 4, out of a total of 5 children, with diagnosed celiac disease (biopsy and all).

Today, I happened across a just-published report out of the Knesset summarizing the current situation for those with diagnosed celiac disease in Israel and thought I’d share the highlights with you.

I’ve outlined the important take away points.

1. Not all blood tests are equal. Last year’s report from professionals in the field said that kupot and hospitals all use different blood test screenings, which don’t all maintain the same accuracy, which can cause false negative results. [Case in point: both my daughters initially didn’t test positive for celiac in the blood, which delayed diagnosis by about 7 years.] They strongly suggest that all kupot and hospitals adopt the screening test recommended by the EU.

My Response: Negative result in a blood test does not mean that you (or your child) does NOT have celiac. Focus on symptoms, and perhaps, ask for a biopsy.

2. As of June 2020, when the Knesset asked the four kupot for data (since the Ministry of Health has no national data on the number of celiac patients in Israel), there were 33,000 individuals diagnosed with celiac. This doesn’t count those in Maccabi, who, for some reason, refused to provide their data. This is ~%0.5 of the total insured population. The more accurate number may be around 46,000-66,000 individuals. The majority are women and about half are under age 18.

3. The centrality of the gluten-free diet is the current treatment of the disease, and because of its expensive nature, patients face an ongoing economic challenge. The issue has come before Knesset several times between 2009 and 2019. Yet none of these bill proposals advanced to any actual changes in the law. In fact, they never got beyond the first reading.

4. The government checked the prices of five basic items that, apparently, are the most common purchases among Israelis. Wait for it!: white bread, crackers, pasta, pretzels and cornflakes. (What?!) The price differences were found to be between 80%-1,043% more expensive for gluten free products. (Just ask my bank account).

5. Currently the only government assistance to offset these costs is through the Ministry of Welfare. If a family earns less than 4,000 ILS per month, and has a child with celiac, they are entitled to 100 ILS subsidy per month. (Thanks for the gumball, Popeye.)

6.The government report estimates that a celiac patient spends ~2,800 ILS per year extra on gluten-free food items.

7. One government suggestion has been to reimburse those with celiac to the tune of 2,800 ILS per year. This suggestion was shot down by the Ministry of the Treasury as catering to the needs of the very few, while offering an opening for other special dietary needs groups, like those with diabetes, to ask for similar reimbursements.

I would like to point out that those with diabetes are eligible for disability stipends, while those with celiac are not.

8. After several suggestions, the current recommendation is to add gluten-free products to the 1995 National Health Law, defining them as specific food supplements, therefore eligible to be purchased at a subsidized rate.

9. Despite the ongoing suggestion of the Ministry of Health and the Inter-government offices committee to offer financial assistance to celiac patients to offset the costs of gluten free food, there is no agreement yet on this issue.

The bottom line for those diagnosed with celiac? We’re still waiting for the government to catch up to our reality. Let’s hope that happens quickly.

Quick shout out to the celiac society in Israel, who really has labored tirelessly to rectify this situation. I’ve been a member off and on ever since my first child was diagnosed (about ten years ago). I have no affiliation with them and no kickbacks, but if you want to make any change regarding government policy re: those with celiac, I recommend joining their ranks.