Gluten-Free Diet Repaired Gut, But Celiac Disease Symptoms Continue

[Bubba's Mom]

Boy do we ever have a similar story. I have been on a 8 month quest to define my illness after previously being perfectly well until august 9th, 2011, then got ill and have not right since. I think I have had virtually every conceivable test and have three docs daignose me with celiac disease including four biopsies and labs, one loacal, two a Mayo clinic and one at univ of michigan. I have had my gallbladder out in 12/2011, had MRI's, cat scans, impedance and PH probes and have no acid tests, had food allergies to casein but eliminating did not improve symptoms, had a pet scan looking for cancer, MRI of brain, c-spine and thoracic spine and innumerable studies looking for parasites, stool studies and pancreatic tests. Most recently after bring gluten free for 6months my biopsies are normal and all celiac labs are normal. yeah that is great...... but I feel terrible everyday!!!!! I have virtually constant epigastric pain, still frequent nausea, tremendous pain into my back and rib cage everyday requiring pain meds to be able to even function(and yes I suffered for 5 months without them and cannot take the pain anymore). I feel like I am drunk every morning when I wake for at least 4 hours and foggy headed with a shaky out of body feeling that then improves slightly in the afternoon. And despite being "normal" on my biopsies and labs, I am far from normal, as a matter of fact I am no better than when I started on august 9th. I was perfect before, no dairy problem, no gluten problem and am 41 y/o then overnight bang sick!!! I have no explanation nor do 7 different docs including rheumatologist, endocrinologist, infectious disease, PMR doc, and 3 gastroenterologists. I wish someone would indeed explain why symptoms persist despite being intestinally healed supposedly. Trust I have looked at virtually everything I can think of. I am so frustrated I could puke and tired of having my life stripped away by this bulls...! If anyone feels the same, please chime in

I'm so sorry you are still having such a rough time. My story is very similar to yours..except I didn't get my gallbladder taken out when advised to. I'm hoping the function will improve on a gluten-free diet.

I went to the Mayo in Florida and they referrd me to the Mayo in MN. I'm waiting for an appointment.

There are a couple of things that have helped me, so I'll mention them to you.

1.) if you are taking an acid reducing medicine you may not need it? I felt better after going off it and adding digestive enzymes instead. My GB pain improved a LOT after stopping the PPI. None of the GIs I saw thought to take me off the med!

2.) I added coconut oil to my diet..at least 2-3T. a day. It has a healing effect on the digestive system and my brain fog/dizzyness is improving. Coconut oil feeds the brain just like glucose does, and improves your healthy cholesterol levels. I like a spoonful in my morning coffee, and add it to cooked veggies, etc.

3.) If you've had your gallbladder removed, but still have pain like GB..it may be the sphincter of Oddi? Sometimes that gives symptoms like GB trouble. Have they checked that?

4.) you may have had a lot of damage and still have more healing to do? Some of the damage may lay outside of the reach of an endoscope?

5.) you may have an additional intolerance? Have you tried a food log to try to figure out if there's something else that's "getting" you? For some people it can be a food additive, dye, gum, etc., or fructose malabsorption.

In my case I still have pretty severe damage, even though I'm gluten, soy, dairy, peanut, and MSG free. They put me on a low dose steroid that acts only in the gut..Entocort, to help me heal. I don't like the idea of being on steroids, but these are mild and have made a big difference for me too. You may want to consider that option if this feeling bad continues?

Best wishes to you. I know how miserable it is to have your health go away..and not come back.

[CeliaCupCake]

So sorry you

[Skylark]

I do OK with bananas that have black spots so they're less starchy and small, occasional servings of rice. I really hope you can tolerate some starch if it's important to you.

If you prefer food lists I'd go with the SCD lists at Open Original Shared Link and skip the book. It kind of depends on whether you are going to take the plunge and do GAPS with the homemade fermented veggies and all the soups or whether you think you can settle your symptoms with SCD. I think you could do SCD with pretty much online resources. I use the lists mostly to remember what sorts of beans are allowed and to check odd veggies, like I would have thought parsnips were OK but they have starch. I cook mostly without recipes too, though oddly enough I adore cookbooks, especially ones with pictures. Go figure.

I have the Internal Bliss cookbook too, being a cookbook fiend. It's only recipes and had some good stuff like a honey sunflower seed cake recipe I really like. A-m-a-z-o-n has resellers and you can get it for under $20 including shipping. There are also other SCD cookbooks. I found a nice one at my local bookstore. Or just cruise the Open Original Shared Link website for free inspiration.

[Bubba's Mom]

So sorry you

[lucia]

I'm glad to hear the SCD is working for you. I never bought the book, and I did fine with the SCD diet. However, I didn't have any baked goods the whole time I was on it.

[CeliaCupCake]

Thank you, Lucia.

Thanks Skylark for the very helpful SCD lists and scdrecipe.com links, and yes, I’d prefer to follow the SCD than the GAPS. I think you need to be a bit of a domestic goddess to follow the GAPS, and the kitchen’s the last place I want to be!

After my second endoscope the GI said it looked like I *might* have refractory sprue. When they looked at the biopsies by microscope they found more eosinophils rather than T lymphocytes, which would be more indicative of a second food intolerance...maybe. I guess a lot of the Dx is up to the person looking at the slides? That's why I've been referred to Mayo, and they requested all of the slides from previous scopes.~ Bubba's Mom

I do hope the Mayo find more conclusive answers for you. I hate cavalier decisions made about something as serious as celiac disease.

If you want to try the coconut oil I highly recommend the Nutivia brand organic extra virgin. It has a wonderful taste and smells good too. ~ Bubba's Mom

I do hope it’s worth it as it’s very pricy compared to vegetable cooking oils.

If you are wanting to avoid starches..maybe try using the coconut flour for baking? ~ Bubba's Mom

Oh goodie, so I don’t have to cut out cakes and biscuits after all(I have a sweet tooth).

I'm wondering if you have access to a library? You might be able to check out various cookbooks related to the Specific Carbohydrate Diet, etc.? ~ Bubba's Mom

Yes, I do have lots of access to them, but don’t have the time searching for and returning the books. I prefer to search and buy what I want from the web.

Have you tried taking a digestive enzyme when eating starches? I've found they help quite a lot.~ Bubba's Mom

Gosh, I had no idea there was one! I know there’s one for lactose intolerance as I bought some, to later discover from a hydrogen breath test that I wasn’t lactose intolerant after all, so they ended up in the bin.

I see my coeliac specialist tomorrow after a long wait, so shall ask him about those enzymes and other suggestions made here.

[Skylark]

Oh goodie, so I don’t have to cut out cakes and biscuits after all(I have a sweet tooth).

Honey is your main sweetener on SCD and you don't want to be eating gobs of it. What I found though was that sweetened foods started to taste VERY sweet once I got rid of refined sugar and went low-starch. I'd make coconut flour banana muffins and the sweetness from an overripe banana was almost overwhelming, with no added honey at all.

I can't wait to finish this Failsafe elimination. It's helping a little but not a lot and I'm so tired from eating starches.

[Bubba's Mom]

Honey is your main sweetener on SCD and you don't want to be eating gobs of it. What I found though was that sweetened foods started to taste VERY sweet once I got rid of refined sugar and went low-starch. I'd make coconut flour banana muffins and the sweetness from an overripe banana was almost overwhelming, with no added honey at all.

I can't wait to finish this Failsafe elimination. It's helping a little but not a lot and I'm so tired from eating starches.

I noticed that things seemed a lot sweeter after I went off sugar for a while too. I guess our taste buds get reset?

I hope you can get things sorted out soon SkyLark. The hard part is..it seems like we have to do everything in slow motion when trying to figure out what foods we are reacting to? I don't know why our bodies don't come with an owner's manual?

[Skylark]

OMG no kidding! It would be so much better if we had an owner's manual! Yes, healing these chronic sorts of conditions is pretty slow. I'm feeling a wee bit better this week so I'm encouraged that all the various things I'm doing are helping.

[Bubba's Mom]

OMG no kidding! It would be so much better if we had an owner's manual! Yes, healing these chronic sorts of conditions is pretty slow. I'm feeling a wee bit better this week so I'm encouraged that all the various things I'm doing are helping.

I'm so glad you're seeing some improvement. At least it looks like you're on the right track? It's frustratingly slow though.

LOL..if I came with an owner's manual my Mom probably would have thrown it out? She didn't like clutter..and didn't like anyone telling her what to do either!