Recovery from celiac disease?

[bigknitwit]

I had my ds screened for celiac and his ttg came back really, really high. We saw the gastroenterologist today, and she said she's never seen numbers that high not be celiac disease (ttg of 200 when the norm is 0-19). We are going ahead with the biopsy (hopefully asap) to confirm. This took me somewhat by surprise, since he has no bowel issues. He is just extremely irritable, which I had attributed to his undermedicated, underactive thryoid (and annoying endocrinologist who I am trying to replace).

Anyway, given that he is most likely celiac, what steps should I be ready to do (post-endoscopy) to help him heal? He loves raw dairy, but I'm wondering if we need to eliminate it given the celiac, at least while he heals. Will it become apparent with the removal of gluten from his diet that he is also not tolerating dairy? Should I have any additional testing done - allergies? Vitamin deficiencies (B12? or others)? Or is it pretty much that he is deficient in everything? What kind of supplement program should I be thinking about? My head is spinning...

[quietserena]

:

I am not a celiac but I am sensitive to gluten. So, my answers might not be as complete as someone else who'd come along. I've been gluten free only since February.

If it were my kid, I wouldn't eliminate dairy along with gluten until you see whether there's an issue with it. A lot of people sensitive to gluten do react to dairy too at first until their gut heals but not all do. It's unclear from my research whether raw dairy is lumped in here so someone with more experience will have to give you a personal account here. I do know that a lot of people take out dairy for about a year until the gut heals and then add it back in with no problems. That seems to point to the fact that there's no real issue with dairy long term, that it just seems to irritate things while they're healing.

I'd make sure that his diet includes cod liver oil and ferments along with plenty of fat so that his body has enough building blocks to rebuild the intestine. Basically, follow your good TF diet heh. I personally wouldn't do further testing, a biopsy is traumatic enough even for an adult. You can probably assume that he's somewhat deficient but given a good TF diet, a lot of that would get restored.

I know that this is all hard for a mom to go through! I can't even imagine. But, celiac is manageable and there are a lot of people who do really well with it. And you've already got the TF roots and that'll make the transition even easier.

[CrunchyFarmGirl]

I would just eliminate gluten as a test rather than a biopsy. That sounds so traumatic. I've read that 90% of those with gluten problems have dairy problems as well. They both can have an opioid effect on the body/brain which is more common among those that are gluten sensitive. It's the casein in the milk that is a problem not the lactose, so having it raw shouldn't make a difference for those people.

My kids are recovering from gluten and lots of other intolerances and needing lots of gut healing. I have put them on CLO daily, no grains, no dairy, tiny amounts of kombucha, probiotics, lots of organic pastured meats and lots of animal fat. They eat fruit but not too many veggies, but that's just their habits not for healing reasons. Although high fiber diets can be damaging while healing severe gut damage.

Best of luck. I know how hard it can be to make this diet part of your life, especially with kids.

[Attached Mama]

I have a friend with Celiac and it's really quite different than a gluten allergy - tho gluten is an issue in it. Her blog has some posts on Celiac explaining it and also lots of great info on what to eat, etc. She is a TF person as well !

www.inclotheslinealley.blogspot.com She'd prob be happy to answer questions as well, tho it may take her a bit of time to get back to you since her husband was just deployed and she was just diagnosed with MS as well.

[JaneS]

The thyroid issues are most certainly caused by gluten then... see the article "Before the Villi are Gone" at www.enterolab.com. Gluten intolerance has been linked to many autoimmune disorders. Its the tip of the iceberg so to speak.

Be careful of the biopsy test. Remember you can have partial atrophy that might not be conclusive on the test. I would not consider that the gold standard. Traditional medicine views celiac disease much too literally... kind of like not admitting that IBS caused by antibiotic damage is really on the the same spectrum as more serious IBD and Crohn's, ykwim?

Glutamine is an essential amino acid the intestinal lining uses to repair itself, I would either give homemade bone broths every day or a glutamine supplement.

B12 deficiency can certainly correlate with his symptoms. Zinc would be another important test, you can do a taste test for zinc.

The SCD diet might be a good read right now. It talks a lot about villi and their role in digestion. If I remember correctly it also might list the nutrient deficiencies correlated with villious atrophy. The SCD was the original cure for celiac disease. www.breakingtheviciouscycle.info

Not sure about other allergy tests. I don't know if having gluten issues would raise total IgE like other food allergies do? It certainly can't hurt to do a blood RAST or ELISA test.

[Pookietooth]

Firefly has healed her celiac disease with energy healing among other things. I don't know how much she posts anymore here though.

[quietserena]

JaneS, your posts are always so enlightening.

[bigknitwit]

Thanks so much everyone. I am trying to take this one step at a time. I know many here would say to skip the endoscopy, but I feel it's important for closure, and full medical diagnosis. Otherwise there is always the temptation to be incomplete in our removal of gluten from his diet.

The funny part is that he was already pretty low on gluten. I just wish I had requested the test for him sooner (who knows why his ridiculous endo didn't order it - he already has autoimmune thyroid issues ). He just had no typical symptoms of it, and his IgG tests from 1.5 years ago showed no reaction to gluten. Makes me wonder about the reliability of that test.

For now, he has to continue eating it in preparation for the endoscopy, so I am spending lots of time making calls to make that procedure asap.

[Panserbjorne]

Originally Posted by Pookietooth

Firefly has healed her celiac disease with energy healing among other things. I don't know how much she posts anymore here though.

Not much, but I'm here today!

I did heal and am back on gluten...though no more than a couple of times a week. I did eliminate for YEARS and I'm certain that was part of it. I feel great, but I'm not yet willing to put dd (also dx wtih celiac) back on it without really exploring how this works for me. But I reintro'd it in June and have been great. I even had one crazy week long binge where I ate gluten practically at every meal and definitely ate it daily.

I did a TON of things, some dietary, some energetic, and some herbal. It's been a long journey, but totally worth it.

[mtn.mama]

Thanks for posting this Firefaery...

We are not diagnosed Celiac. But I think the doctors would invasively charge us with it. I believe we are healing from it, as we can get glutened now and not react. We ARE going to heal completely.

After everything I've learned thus far on this journey, I don't want to go back to eating it all the time. I just want to know that if we're eating healthily it won't make us sick.

Good luck all!

Lisa

[bigknitwit]

We had the endoscopy done on Thursday, and the doctor could tell us right out of the OR that Steven has celiac disease So, now I have begun the process of de-glutening my home. Meanwhile, even though we were already a "low-gluten" family, I think he is having withdrawal symptoms. His anger/rage has really kicked up. Today is day 3 gluten free. I get the feeling it's going to get worse before it gets better...

Now I need to have an endoscopy done, but I'm not sure when as I am pregnant, and my other 2 kids will need to be fully screened.

[WildIris]

Thanks for posting an update. I'm glad the procedure is done and that at least now you know for certain what is going on. I'm sorry to hear that your son has Celiac but it's good that now the healing can begin. My friend with Celiac who also has two daughters with Celiac was amazed by the fast changes in their health and growth and happiness. It's good you are catching it now for him. Good luck with the transition! More for you and the little one.

[JaneS]

Originally Posted by quietserena

JaneS, your posts are always so enlightening.

Thank you I needed some love today!

[JaneS]

Originally Posted by bigknitwit

The funny part is that he was already pretty low on gluten. I just wish I had requested the test for him sooner (who knows why his ridiculous endo didn't order it - he already has autoimmune thyroid issues ).

Because allopathic medicine has blinders and refuses to study food allergies totally. The expression of autoimmune illness is still catagorized as "alternative". Like a bacterial infection causing ulcers used to be called quakery, they lag way behind in knowledge and vision.

P.S. my friend with Hashimoto's had her antibody tests after not quite a year being gluten free and it's normal. Her DHEA is back up too. The endocrine system is greatly effected by allergies.

[bigknitwit]

Originally Posted by JaneS

my friend with Hashimoto's had her antibody tests after not quite a year being gluten free and it's normal. Her DHEA is back up too. The endocrine system is greatly effected by allergies.

Ds' GI doctor said exactly the same thing (which made me think he wasn't half bad at his job!) - that his thyroid problem might literally just go away. Now that would be a nice silver lining.

[JaneS]

Keep us posted b/c I'm certain it will. Good luck!!

[WuWei]

I just wanted to say how much I appreciate all the mamas' attentive and attuned awareness here, and how much I learn from your observations and experience. :


Pat

[quietserena]

for those who need them and : for everyone!

[gilamama]

Originally Posted by firefaery

Not much, but I'm here today!

I did heal and am back on gluten...though no more than a couple of times a week. I did eliminate for YEARS and I'm certain that was part of it. I feel great, but I'm not yet willing to put dd (also dx wtih celiac) back on it without really exploring how this works for me. But I reintro'd it in June and have been great. I even had one crazy week long binge where I ate gluten practically at every meal and definitely ate it daily.

I did a TON of things, some dietary, some energetic, and some herbal. It's been a long journey, but totally worth it.

wow ff i am so happy for you.

i personally am warry abt introing things to my dds untill there imune systems are totally mature. i am sure that you will know when the right time is.

[lastrid]

In addition to the SCD, I would check out www.gapsdiet.com. It's like a TF SCD. Dr. Campbell-McBride has been speaking at a lot of WAPF conventions lately.