Pete Dixon

So you've made the decision to try Helminthic Therapy. What do you do now?

Celiac.com Sponsor (A13):
1) First you join the Facebook Helminthic Therapy Group @ https://www.facebook.com/groups/htsupport and make an introductory post. Tell the members about what you hope to achieve and a bit about your medical history. The regulars there are veterans at HT, use helminths (usually hookworms) themselves, and can answer any questions you might have. John Scott is the leader of the group and has been a hookworm host for years.

2) Do a heavy scan of the wiki @ https://helminthictherapywiki.org/wiki/Helminthic_Therapy_Wiki. It's a compendium of all the group knows about Helminthic Therapy. All the successes, failures, discoveries and best practices are all wrapped up in the document. If anything interesting emerges from members from their experiences John adds it to the wiki.

3) Pick a provider from the wiki list and contact them. There are a number to choose from, particularly for hookworm larvae. Depending on where you live picking a local source might get you your larvae quicker. So far as I know the larvae are all from the same species. The breeding techniques used by the specific provider might yield some small differences in efficacy but by and large the product should largely be the same from any of them.

There are differences in price and speed of delivery. Some providers offer courier tracking and express delivery. These are valuable services and I suggest you avail yourself of them as the cost is worth it. For example, my first purchase took 3 weeks, then with Covid messing up shipping the next several took 43+ days. Nowadays with express shipping my new provider shipping to Canada only takes 9–11 days. In my experience PayPal is the easiest way to pay, Bitcoin the hardest. Just link PayPal to your bank account and you can pay immediately.

The provider will tell you what number of larvae they can sell you. The protocol now is to start small, 3–5 larvae for the first batch, then if things go well in a month or so another order is made to add more. It used to be people started with 25-50 larvae. Those days are long gone. Smaller initial numbers are chosen to avoid side effects. You might eventually graduate to 25 larvae per dose. That's what I use. Or you might find you need less to stay equally healthy.

4) From all providers what you get is a vial of larvae, a pipette, and some saline. You empty the larvae containing vial onto the included gauze, rinse the vial with the saline to collect any stragglers, and slap it on your arm or leg and keep it there for 12 hours. When you remove the gauze use an over the counter cortisol cream on the wound, it'll reduce the reaction on the skin.

5) Hookworms don't live forever. It varies for everybody, but expect to have to regularly order more to maintain relief from symptoms. For me the cycle appears to be 5 months. That's what's required to maintain a viable colony. My annual cost to buy from my provider is then ~ $200 CAN * 12/5, or about $480 CAN.

6) Recently I discovered that it took 30 days before I could tolerate gluten. Natively I react very strongly to even minute gluten exposure so it was obvious when it was all right to restart a gluten containing diet. The moderators here at celiac.com are strong advocates of getting tested via blood tests and gut biopsies. It's hard to argue with that logic, however for me not getting sick and having regular, well-formed stools is all the evidence I need to know I'm ok.

7) For the DIY-minded, consider buying a microscope and harvesting hookworm eggs from your poop so you can grow your own supply. This requires care and perseverance to learn but will drop your ongoing cost of treatment to near zero. There's a side HT group on Facebook that shares their experiences for doing this and the wiki covers it as well. 

Know that HT doesn't allow all celiacs to resume eating gluten. There are no stats as to the success rate I can offer, but I can only state the obvious that if you don't try you won't know if HT will work for you. For me it's been life changing and a chance to feel normal again. Good luck.