Two Months In And Still In Pain

[mcbphd1]

Hi All. I have been lurking for two months, trying to learn as much as possible. Was diagnosed via blood test with super elevated antibody levels on all 4 markers. I saw my GI early last month -- he says since I was already gluten free for a month and the blood levels were so high, no reason to go back on gluten and do the endoscopy. My symptoms were: on and off pernicious anemia, elevated platelet counts, mildly elevated liver enzymes, and fatigue, all for several years. My diagnosis came after I got to the point this summer where anything I ate caused pain. I had awful bloating, gas, constipation, and pain in the mid abdomen as well as in both sides. The gastro symptoms started about 2 years ago - I had a diverticulitis attack that I had a lot of difficulty recovering from. The celiac diagnosis made a lot of sense - I figure I have had this for somewhere between 4 to 7 years before finally being diagnosed.

For the first two weeks gluten free in early September, I immediately felt better. The gnawing pain to the right of my navel went away after a few days, and the gas seemed to get better. However, since then I seem to have gotten worse, and have had a lot of continued pain, gas, and bloating. I am gluten free and 95% dairy free - occasionally I have small amounts of cheese or butter, or small amounts of dairy in salad dressings, like ranch dressing. Otherwise, I have been avoiding dairy because my GI doc said that many people with celiac are temporarily lactose intolerant.

I am concerned about my continued level of abdominal pain and bloating - I got better at first but then seemed to get worse. I'm still learning about cross-contamination, so I have probably eaten things like chips at restaurants that were fried with sopapillas. Here is my question - my GI said that my food sensitivities should clear up after about 6 months. Should I give the gluten-free diet 6 months to work before assuming that some other food is causing pain? How long did most of you have pain after going gluten-free? Is two months too long? Because of my recent history with diverticulitis, any abdominal pain is very stressful, as I am always worried about having another attack.

Another question - currently I am taking medium level doses of magnesium and vitamin A, high doses of vitamins C, E, and zinc, l-glutamine, mega doses of probiotics (VSL3), ginger tea, DGL, and a teaspoon of miralax each day. Should I be supplementing with anything else? Has anyone tried aloe vera? Slippery elm? Does a liquid diet help? Thanks!

[dreacakes]

Hi,

I too didn't get better right away when I went gluten free. I felt good for a few days, and then bam! I was even sicker for awhile.

Part of the reason was I went through gluten withdrawal, gluten activates the same part of your brain that opiates do (crazy, huh?)

The second reason, which it took me a few months to figure out, was that I am sensitive to ALL grains, and cow dairy. All grains have gluten in them. And the protein in cow dairy is molecularly almost identical to gluten, so if you're gluten intolerant, you're probably cow's milk intolerant, and that's not a temporary thing. (just a note: lactose intolerance is totally different than casein, or milk protein intolerance. Also, sheep and goat milk have different type of protein, some people can tolerate them.) You might want to do a full elimination diet to figure out if you have any other food triggers.

When I did an elimination diet this supplement was really helpful, and the diet that goes with it was too:

Open Original Shared Link

Once I cut out grains, with no cheats, made sure my kitchen was totally gluten free (my hubby eats gluten free at home), and went on a paleo diet, I got better really fast.

As far as supplements go, it partially depends on what you're deficient in. Magnesium in pill form does absorb well, you can find sprays on Amazon that absorb better. Also, a liquid B12 vitamin is always a food idea, since it absorbs better sublingually. Another great thing is real food supplementation, like liquid chlorophyll (also high in magnesium), nettle infusion (easy to make yourself), and cod liver oil (only the traditionally made fermented kind- This is a good brand: Open Original Shared Link)

Bone broth is also a really good idea while you're healing. Super easy to make, you just get some grass fed beef bones and simmer them on low heat, with a splash of apple cider vinegar, for 12 hours or longer. It really is a miracle food.

If you haven't looked into it yet, the GAPs diet has a wonderful program for healing the gut. Worth checking out!

Also, my food sensitivities have not cleared up after nearly 3 years on a gluten-free diet and a year and a half on a grain free diet. I still can't eat cow dairy or nightshade plants without my arthritis flaring up. I don't know where your GI doc got that idea!

All the best to you, and I hope you feel better soon.

[BabsV]

Sorry to have to say this but I'm 14 months post-diagnosis with 'normal' antibody tests at this point, and I'm still dealing with pain issues. I can say eliminating ALL grains (except rice), corn and legumes from my diet has helped somewhat. Also a good idea -- get rid of all processed foods and don't eat out. I'm very careful about how much caffeine I ingest, and I'm not drinking wine or any other alcohol. I also don't overload on spicy foods...my system just seems happier that way. On a positive note, I have healed enough that I can now eat foods that sent me into agony immediately post-diagnosis (apples, raw veggies, etc.)

The nutritionist I'm working with has said she's often seen newly diagnosed Celiacs who have intolerances to various food families (nightshades, dairy, etc)...sometimes those turn out to be temporary intolerances that resolve as the body heals and sometimes they turn out to be permanent.

I had an evaluation with Dr. Fasano at the Univeristy of Maryland Center for Celiac Research in August this year and one of the doctors mentioned that they see the pain issue a lot in patients who are diagnosed as adults. It really doesn't help that we adults heal so much more slowly than kids who have been diagnosed. They recommended another scoping just to check levels of damage (is it improving?) and also to rule out any other organic causes (infection, etc.) I'm not enthused at the prospect and have been dragging my feet in setting up the appointment but I know I need to do it...

As for vitamin levels...have you had tests to see where you might be deficient? Getting a baseline is good for comparison later on. I'm finally getting out of the anemia quagmire I was in and my vitamin levels are finally back in the normal ranges...low normal but are moving up slowly. Whew. I'm working with my nutritionist to improve levels through food as much as possible versus simply relying on supplements although I'm doing that also.

Good luck. It isn't a quick fix kind of thing for a lot of us here...the doctor who diagnosed me told me it would be at least 6 months to see any improvement and probably a year or more to really start feeling more like my former self. She's proving to be correct. Sigh.

[GFinDC]

Hi MCBPHD1,

Recovery time can vary an awful lot.

Try folowing these tips and see if things improve.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

[mcbphd1]

Thanks All, I am doing most of the above with the exception of a couple of things. First, I'm not taking digestive enzymes - anyone have a brand they like or could suggest? Would simple bromelain be OK? or does it have to be a mixture? Also not completely avoiding starch and sugar. I don't eat seed due to diverticulitis - the list of foods is getting pretty short. What about Bob's Red Mill Baking mix - do you all consider that "processed"?