No Negs Just Pos

[Delta]

Hi Everyone,

I am posting this on a few Celiac Sites and hoping to come up with at least some answers - POSITIVES

But can I say that much info I have researched on Celiac/Coeliac sites forums seems to be evasive.

I don

[pricklypear1971]

I'm Hashis, pending celiac/gluten/DH diagnosis.

What works: a gluten-free diet, thyroid meds(t3/t4), multivitamins, probiotics, and digestive enzymes with each meal, and for me a low-iodine diet to get rid of the DH.

Yes, regular light exercise. Helps regulate hormones, etc.

[shadowicewolf]

i wonder if you have other intolerences outside of gluten. you said you were lactose free but what about soy? It can be a common problem among celiacs.

[zus888]

Have you had your thyroid checked? How about your blood tests? Are you lacking in any vitamins or nutrients? Wondering if there is some other underlying cause/disease/condition.

Sorry I can't help you further. I have not had your symptoms and cannot give you any first-hand experience.

[CRashster]

Some probiotics have wheat. Be careful.

[mushroom]

With all due respect to your desire for positives, it is almost impossible for anyone on the board to answer these questions:

Why are my arms and legs, still stick thin and getting thinner?

Fat stomach

I still cannot gain weight?

My hair is still coming out?

My eyes still look black?

One of your questions I can answer is that yes, I found digestive enzymes incredibly helpful in digesting my food - even sometimes still resort to them when I am having digestive problems. Probiotics also help the gut to heal.

Your health is not going to be optimal until you have healed, and you will not fully heal unless your nutrient levels are all optimal, so it is important to get all those checked and to supplement deficiencies. These might help with the unanswerable questions above. As another poster mentioned, celiacs need to also have their thyroid function checked.

I never tried testosterone.

Other physical problems have prevented me from regaining muscle tone.

[T.H.]

I can say what was happening to me, and what worked. Might have some relevance. Hope it's positive in the manner you're hoping for. :-)

After I went gluten free, I was losing weight like mad - especially muscle. My hair was coming out. I was bloated and nauseous. I looked exhausted all the time. My vitamin levels kept dropping. At that time, I was eating ground bison, sweet potatoes, a couple veggies, whole grain quinoa, an oil, and a salt. That was it. I couldn't figure it out, docs couldn't figure it out.

What I did that made me stop losing weight, stop being bloated, stop looking exhausted, and got my vitamin levels up...

1. I made homemade probiotics. I fermented fall/winter apples with nothing added and made apple cider vinegar. I did not pasteurize because I wanted to keep the bacteria alive, so I merely refrigerated it after it fermented completely. Kimchee will work in a pinch. These add extra good bacteria to the gut, so can help a little with digestion, I hear.

2. Suspected I might react to corn and finally found out that all iodized salt contains corn, so I dropped it. Aches and pains and some of the exhaustion improved after I went to a sea salt with no iodine. I had to find an iodine supplement, liquid, after that.

3. I changed oils, as I found out my oil company also processed wheat germ oil on the same line as the other oils. That helped some, too.

4. Changed meat companies. My store didn't carry my usual brand of meat for a few weeks, so I stopped eating it and was feeling better. It made me sick when I tried to start up again. Found out later that the company had started making sausage with wheat in the same facility where they made the ground meat I usually ate, so there went that one. Now I eat meat from a local rancher's grass fed bison.

5. And finally, I went super crazy gluten free, and that has now done the trick. I was just tested in the last few weeks for my 2 year gluten-free check up (1 year super crazy gluten free), and my vitamin levels are normal now, my villi are healed, no inflammation in the gut (there was a lot before), and my thyroid numbers have returned to normal.

Basically, to eat crazy gluten free, I have to find food that has had as little contact with gluten as is physically possible. I get my produce from farmer's markets now, where I can interview the farmer, and it's always organic, but organic alone still often makes me sick.

I ask questions about their pest control, their mulch, their fertilizer, their compost, their soaps, their sprays, the animals allowed contact with the food, manure, etc... Fish emulsion, for example, is usually from fish that are grown in crowded conditions and swimming in their own food - which is gluten. I get sick from veggies on the ground grown with fish emulsion used, or gluten contaminated straw in the mulch. All sorts of weird 'gluten' additions have shown up since I started this, like poison bait for cabbage worms is sometimes mixed with wheat flour and sprinkled all over the ground around the cabbage. Who knew?

So, that's what has worked for me. Avoiding corn has been a huge part of my healing process, and with organic produce, that's tricky. Cornmeal can be spread over the ground to prevent weeds in organic farms, or used in sprays for tomatoes, in vinegar, all sorts of fun stuff. Avoiding some of my mild food allergies has helped some. Adding the fermented vinegar has helped some. And avoiding truly odd gluten additions to my produce and grains has helped the most, I believe.

If I screw up, and eat something that isn't from my farmer, or that I haven't washed with soap and water thoroughly (because other people DO touch the produce before I get it, yeah?), I start getting bloated and having problems within a day or two.

[tarnalberry]

Some questions:

1) Is your home and all eating locations completely gluten free?

2) Have you tried eliminating dairy (this is NOT just lactose, but rather casein)?

3) Have you been evaluated for other issues that, correlated with celiac or not, could be contributing to the issue - like Hashimoto's?

4) Have you had your vitamin/mineral levels tested, and if so, what are they?

5) Have you had your free testosterone levels tested? (That's how you'll find out if testosterone is likely to help.)

[Delta]

Thank you! Thank you! Thank you!

You have all been so kind AND POSITIVE!!!

I am going to read through again all you replies to 'digest' further (memory fog) and try out some of your ideas.

Just to add as I have been asked some questions.

I take Yakult, usually every other day.

on a daily basis i take Folic Acid and B12 tincture.

I do eat corn pasta? and sweet corn.

I do stay clear of mushrooms and tomatoes, and a lot of fruit as I was not good on it.

I've had blood Tests which said my vitamins levels were 'fine' ??

My Endoscopy shown my villi ok ??? but this was after a year gluten free.

As a child I always had tests from Dr's for Thyroid which came back ok.

I have to eat regular or blood sugar feels low.

I dont eat sugary drinks at all. Feel a little better when stopped that, a little less - feeling the need for sugar.

Had diabetes test, and fasting was ok, but blood sugar tests do show as a little low sometimes. hypoglycemic I think.

I just want to look like a woman again and get my curves back, I'm so fed up when i go out and people say "you've lost weight, you can't afford to lose it, are you dieting? " arrghh!!

So I am going to try these things out and see if I can gain my muscles back again.

Please anymore advice is welcome.

Thank you Thank you again

Delta x

[Skylark]

Your negative bloodwork and endoscopy suggest that you are gluten-free enough, though I do feel better if I'm "OCD gluten-free".

It sounds like you might have trouble with fructose. That will cause bloating and the fat stomach. You should look up information on a low FODMAP diet and give it a try. I also think of nightshade sensitivity when people mention arthritis. (Tomato, peppers, potato, tomatillo, and eggplant are nightshades.)

Childhood thyroid tests don't mean anything. You can develop thyroid problems at any time and they're common among celiac/gluten intolerant folks. You definitely need a thyroid panel to be sure it's not the cause of the hair loss. Memory problems, fog and fatigue are also signs of hypothyroidism.

I've never heard of a woman being given testosterone to treat problems associated with celiac disease.

[ravenwoodglass]

You mention taking a tincture. Have you made sure the tincture is not made with a gluten grain alcohol? Not all of us will react but I do react to distilled gluten. My local healthfood store called companies for me when I wanted to try a couple and with my being very sensitive it was advised that none of them would be safe for me.

I got for sure gluten free sublingual B12 instead.

[sariesue]

A recent thyroid test is one that is done within the last month according to my drs, I have had 3 blood tests and the radioactive uptake test in the last 3 months. I had normal thyroid numbers for 23 years until suddenly one day they were high. The symptoms that led to testing my thyroid were hair loss and unintentional weight loss.