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Diagnosed Myself


Nanjkay

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Nanjkay Apprentice

I diagnosed myself, just recently, with Celiac or gluten sensitivity. I have been diagnosed with fibromyalgia (which is a bullsh diagnosis), Grave's Disease, stomach problems, Polycystic ovary syndrome, milk allergy, ADD....well, you name it. I finally got so sick, had to stop working and after 10 months figured out I have this even though my bloods came back negative. I have seen hundreds of doctors in my lifetime and I am the one who figured it out. I am waiting on the enterolab results now, but just as a confirmation.

Right now my stomach is so bad from top to bottom, that I am eating homemade chicken soup and baby food. I am off nightshades, corn and soy. I can't get into a Celiac specialist for two more months. Here's my question...what can they do to help? And what can I do to calm my digestive track down?

Nancy


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confused Community Regular

Honestly they cant do anything jsut tell u to stay away from gluten. Have you tried probotics to help heal your insides. I am finally going to start looking into them.

paula

Nanjkay Apprentice
Honestly they cant do anything jsut tell u to stay away from gluten. Have you tried probotics to help heal your insides. I am finally going to start looking into them.

paula

Yes, but right now even they and enzymes are giving me gas... Also a lot of the probiotics have a lot of no-no ingredients...lacotse and soy.

Nancy

confused Community Regular

I know i am having a problem finding ones i can take to, i need gluten, casein and soy free. If i find any I will let you know or if you find some please let me know.

paula

JNBunnie1 Community Regular
Yes, but right now even they and enzymes are giving me gas... Also a lot of the probiotics have a lot of no-no ingredients...lacotse and soy.

Nancy

You might try finding some fermented veggies, but you may have trouble digesting those too. I would cook all your veggies and any fruits that give you trouble for now, and if your chicken soup is helping keep it up. Oh, I read here that Swanson broth isn't safe, try Pacific. And a vitamin B supplement, a lot of people advocate a sublingual B12 so that you can absorb it better, since your digestive tract is kinda pppbbbttthhh.

Nanjkay Apprentice
I know i am having a problem finding ones i can take to, i need gluten, casein and soy free. If i find any I will let you know or if you find some please let me know.

paula

Paula-

I found one by Flora. No bad things added. They come in capsule form and are expensive. I am going to open the capsules up and put them in water.

My stomach seems to be calming down. I am sticking more strictly to staying away from nightshades, corn, soy and peanuts. I seem to get a reaction every time I slip up on one of these things.

Nancy

kbtoyssni Contributor

I also use FloraJen probiotics. There's a whole list on the back of the bottle of stuff they don't contain so they're good for people with allergies.

There isn't much a GI can do for you. They might want to do further testing, but you have to be eating gluten for testing to be accurate. If you've already decided to go gluten-free (which is very reasonable - no reason to make yourself sick for another few months just to get an doctor's ok) I don't think they can do much at all.


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jenngolightly Contributor
I diagnosed myself, just recently, with Celiac or gluten sensitivity. I have been diagnosed with fibromyalgia (which is a bullsh diagnosis), Grave's Disease, stomach problems, Polycystic ovary syndrome, milk allergy, ADD....well, you name it. I finally got so sick, had to stop working and after 10 months figured out I have this even though my bloods came back negative. I have seen hundreds of doctors in my lifetime and I am the one who figured it out. I am waiting on the enterolab results now, but just as a confirmation.

Right now my stomach is so bad from top to bottom, that I am eating homemade chicken soup and baby food. I am off nightshades, corn and soy. I can't get into a Celiac specialist for two more months. Here's my question...what can they do to help? And what can I do to calm my digestive track down?

Nancy

If you don't want to see a doctor for celiac, no big deal. However, two important disorders that go along with celiac are anemia and osteoporosis. You should go to a doctor and have a complete metabolic panel and blood panel taken to make sure you're absorbing the minerals and vitamins you need. If you're anemic, you'll need to take iron. If your vitamin D level is low, you'll need to get a DEXA scan to see if your bone density is low.

I found out I have celiac as a result of finding out I have both anemia and osteoporosis (I'm 37).

Good luck.

Fiddle-Faddle Community Regular

Be careful with baby foods--I do remember some of them containing wheat starch a few years back, not sure if they still do. Read labels!

The BRAS diet rather than the BRAT diet for us (Bananas, Rice, Applesauce, and Soup--but again, read labels--Cambell's chicken broth and College Inn chicken broth contain wheat).

Hope you feel better very soon, and hooray for finding your diagnosis and outsmarting the doctors and the pharmaceutical industry (which supports the bullsh diagnoses so they can sell drugs to mask the symptoms without dealing with the cause of said symptoms)!

Joss Rookie

I suspect I am gluten intolerant and I also have osteoporosis, chronic anemia, asthma, migraines, consitpation, digestive pains, bloatinng and gas. I have also been diagnosed with Graves Disease and RSD in the past and still my doctor wants to be sure and do more tests.

All I know is that my chronic inflamation subsides when I go gluten free. However I am still learning how to do that. I only took out the overt gluten and completely forgot about the covert ones. However with the aid of this board I am on a steep learning curve thanks to all the great people who post here.

I too find probiotics help my digestion, and I use a lactose free one.

Joss

Joss Rookie

Ooops double post.

gf4life Enthusiast
I know i am having a problem finding ones i can take to, i need gluten, casein and soy free. If i find any I will let you know or if you find some please let me know.

For the Probiotics I used Jarro-Dophilus and Bifidus Balance+FOS both by Jarrow Formulas. They both say "Non-Dairy" and "Contains NO common allergens". I didn't have any problems with the4m and I need gluten, dairy and soy free also. Also I use Pioneer brand digestive enzymes. I like them the best.

Centa Newbie

About probiotics, I have a question for those who have gotten into exploring about lactobacillus:

  • I found out that I was celiac in kind of a rolling process, in which a Western doctor refused to follow up for a couple years when I presented symptoms to him; an alternative medicine practitioner (Chinese medicine) told me what I was reporting had to do with GI problems and sounded like a wheat and milk problem; I stopped eating wheat and got miraculously better. There are more steps to the story, my PCP came round, after 2 1/2 years, based on my symptoms, not on the full panel, and eventually I'll get to a good GI specialist to learn what more I can. I have DH, which is a confirming disease. There has been enough Western medicine in this that I consider myself diagnosed, although my doc was either absent minded or refusing to believe what I was reporting in symptoms or not well trained. I think the Chinese medicine practitioner was the one to really pay attention and pinpoint where the problem was.


  • That Chinese medicine practitioner cleaned out my system with some Eastern medicines (I looked them up; none were toxic), then put me on maintenance Omega 3 fish oil and lactobacillus,for GI health, which I've been taking ever since. I did have some problem with milk intolerance but it's significantly better, plus I don't drink milk , it's all cultured: yogurt and no-fat half and half, and some cheese on rare occasion. Feta doesn't seem to upset me; cottage cheese certainly does and milk gives me a rumble.

So it doesn't look like I have a big problem with lactose intolerance at the present, which may affect matters, BUT (here comes the question)

I'm now taking Natural Factors Ultimate Probiotic 12/12 formula with 12 billion active cells (the practitioner had me started on twice that) with 12 different kinds of lactobacillus acidophilus and bifidobacteria. (for anyone interested, it's gluten and soy free but does say it has traces of milk). Sounds pretty lactic doesn't it?

  • But I read: " L. acidophilus ferments lactose into lactic acid, ...Some strains of L. acidophilus may be considered a probiotic or "friendly" bacteria. These types of healthy bacteria inhabit the intestines and vagina and protect against some unhealthy organisms. The breakdown of nutrients by L. acidophilus produces lactic acid, hydrogen peroxide, and other byproducts that make the environment hostile for undesired organisms. L. acidophilus also tends to consume the nutrients many other microorganisms depend on, thus outcompeting possibly harmful bacteria in the digestive tract."

Sounds pretty good. This gives me the impression that the lactobacillus I'm taking is getting rid of lactose by changing it into something.

  • But what is lactic acid, and is it a problem for lactose intolerant people?


  • Trying to avoid explanations by suppliers, who of course would write something to encouragae people to buy their product, I'm coming up with things like this: "When undigested lactose reaches the colon (large intestine), it is broken apart by bacteria. Lactic acid and other acidic chemicals result. It is these products that create the symptoms of lactose intolerance. ...The severity of symptoms usually depends on the amount of lactose ingested and how much of the enzyme, lactase, remains in the intestinal tract.


  • But another source emphasizes the positive role of lactobacilli producing lactic acid: "they produce metabolites such as lactic acid,hydrogen peroxide, bacteriocins and acetic acid that normalize the pH of the intestine and promote a healthy micro-ecological balance. They support healthy conditions in the vagina, and cholesterol within normal levels. They can produce lactase, [with an A] the enzyme that digests lactose (milk sugar) [with an O]"


  • OK, what's lactase, with an A? "Lactase [is an enzyme]. In humans, lactase is present predominantly along the brush border membrane of the differentiated enterocytes lining the villi of the small intestine. Lactase is essential for digestive hydrolysis of lactose in milk. Deficiency of the enzyme causes lactose intolerance.

Not to be too silly about it, but it sounds as if that lactobacillus acidophilus probiotic that I take twice a day is sitting there inside me like a vaccuum cleaner switched on, ready to pounce on any lactose with an O walking by, which is not much, running it through it's "HEPA filter" and throwing out something, lactic acid, that one source says can be involved in unpleasant symtoms and the other source says is involved in returning the gut to a healthy balance. All sources point to the need for enough lactase with an A, to reduce the lactose intolerance symptoms.

  • What's lactobacillus doing for or against lactase, with an A, which I want to be there and which seems to be the determiner of whether or not I bloat, etc.? And what's the relation of lactic acid to lactase with an A?


  • At this point I was winding down on internet searching, but I was reading claims, at least, of some of these probiotics suppliers that lactobacillus produces lactase with an A.

Knowledge check requested; has anyone else researched this further?

All I know is that those probiotic pills don't make me bloat or give other unpleasant side effects of lactose with an O intolerance, and if I skip them and skip the Omega 3, after a few days I don't seem to thrive as much, but that may be subjective, just self suggestion. My stress from work, my exercise and my hours of sleep go up and down, so I could be feeling a little off for those entirely separate reasons.

:D at 12 billion microorganisms per pill you'd think that I'd look like the ~~Hindenberg~~ if lactobacillus acidophilus were in itself a lactose problem or created a lactose problem.

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