BRUMI1968

Well, I thought that I had already replied to this, but I can't find my post

Anyways, I recently found out some new info on my ethnic origin, so I'll just post everything again, with the new info.

Dad's side: French-Canadian, Irish, Jewish, Native American (just a little of the last 2).

My dad's family has a long history of autoimmune diseases. His dad is the only one in a family of 8 to not have an autoimmune disease. And I'm sure if they were to be tested for celiac, most of them would test positive.

Mom's side:Italian, German, and Native American. There also might be some Irish, but right now, no one knows for sure.

My grandpa has had colon cancer, and his mom had the "celiac stomach". She also suffered from severe osteoperosis (her head looked like it was coming out of her chest).

I am tall, about 5'8 3/4". I have fair skin (I don't tan; I burn and freckle), and I have blond hair and light eyes.

What is "celiac stomach"?

Sarah's platelet count takes a dive whenever she gets an infection, like strep. We had her on Predinsone for a short while but it gave her gastritis. We quickly discontinued it for fear she might develop a GI bleed. It really had a beneficial effect on her platelet count, however, and seemed to be the beginning of the upward trend.

Have you read of any connection between Celiac disease and ITP?

I have developed mild scoliosis. Is there evidence that there is a connection between Celiac disease and scoliosis? I also have kaiphosis but that runs on my mother's side of the family in both males and females. I am 54 and was diagnosed with Celiac disease about 2 1/2 years ago, the "silent", subclincial form.

Steve

I think I read that Celiac contributes to all other autoimmune diseases - if in no other way than in making the body suceptible. ITP is not genetic - they don't know what causes it. My doc thought maybe vaccinations or being on antibiotics a lot as a kid (I had lots of bladder infections).

The reason prednison works is because it shuts down your immune system, so it can't kill you. The problem is, then you can catch all sorts of things. In the case of prednisone, the cure is really quite harmful. When I went off it, I had to have an adrenal gland check to be sure it had started working again; while on it, your adrenal glands shut down, which is why you get stone cold tired at 3pm or so.

It was through diet change that I got over my ITP, or at least that it is in remission. At least so it would seem, since that is all I changed. I guess I also got out of a stressful job and lived for a year w/o working near the sea in Port Townsend, WA...that was great too.

I wish you all the luck with Sarah. I didn't go for the removal of the spleen option, which they pushed on me quite a bit, but it works for many. I just didn't feel it was right to be twenty-something and have folks taking bits of me out for the trash bin. Plus, you become more susceptible to pneumonia and other ickies that are gel-coated. I don't think I ran into any natural ideas for ITP other than low protein diet and avoidance of allergin foods. Oh yeah, vitamin C in large doses seemed to work for some folks I recall.

Anyway, best of luck.

Great information! Thanks. I know I'm lacking all the other vitamins/minerals, so I'll start finding some good magneseum and trying that. I'm already better today, but can still feel the process is pretty slow moving through the system. I also appreicate you spelling out hard/impacted stool vs. constipation - because that is definitely more my problem - not that I can't go for long periods of time, but that it is extremely difficult to get out. Thanks, again.

Wow...all that stuff sounds healthy. What about a sugar intolerance? Like fructose or something. is that possible? I'm just grasping at straws now. I certainly hope you feel better!

How long have you had ITP? My daughter was orginally diagnosed with it when she was 14 but after bone marrow studies the docs changed it to aplastic anemia when she was 16, which is considered to be an autoimmune disease. At one point her platelet count was down to 25,000 when, as you know, the low end of normal is 150,000. It was scary! She is now 20 years old and her blood work has been slowly improving. She has had no medical intervention to this point. The docs have just kept an eye on it. The last two labs put her platelets at 150,000 and 125,000, respectively. This steady improvement has perplexed her hematologist. They are now reconsidering the aplastic anemia dignosis. They just don't really know what is causing this, so maybe we are back to the idiopathic concept. In Sarah's case it wasn't just her platelets that were involved but the reds and whites were also suppressed. The platelets were affected the worst, however.

By the way, I should mention Sarah is not a Celiac, that we know of. I am a Celiac but since she is adopted, she wouldn't be at greater inherited risk for celiac disease, at least not from me.

Have you had marrow analysis done?

Steve

I was diagnosed in early twenties. They did a bone marrow biopsy to rule out leukemia, and they ruled it out. The treatment for ITP which you may know is Prednisone for life or removal of spleen. I started on 100 mg of prednisone a day and went down so that by the end of the month, was on about 5mg per day. It was so awful - the treatment practically worse than the disease. finally, I asked to go off it for a while to see what would happen. I went without symptoms for a few years and then one day it went through the floor (was an immune response to another illness we think) and I ended up in the hospital with only 4,000 platelets. Then I had to get three bags of immune globulin intraveinously (sp?) and stay in bed for three days. Anyway, fine now again. I just keep my eye on it.

not diagnosed but docter thinks i have chrons or ulceritive colitis, im rooting for canidid myself

how old are you bully4u

how old are you dionnek

I am 37 and female. I realize that Bully4You is pretty nondescript...it never dawned on me to use my name, which is Sherri.

English/Irish/Scottish/German.

Tall (5ft9)

blond hair as child, got darker and darker; now about 20% gray (at 37 y.o.)

blue eyes

fair skin

My mom and sister are getting tested soon, now that I got a dx.

My doc said pernicious anemia AND celiac disease, but they ddin't check my urine for anything...it sounds like they should've said vast deficiency in B12, probably caused by celiac disease but perhaps then testing for P.Anemia. Anyway, have had one shot and it didn't seem to help too much; take sublingual every day, also not helping too much (with the extreme fatigue, irritation, and brain fog). Do you have to catch up -in other words, does it take a while to take affect?

I had the itchies,mostly on the back of my head,on my spine, and down my rib cage. I thought maybe it was from where the chlorine was hitting me when I take hot showers (which in the winter, I do probably twice a day from being cold, probably from severe anemia). Anyway, I started puting lotion on after I get out of the shower, but I think being gluten free for over a week has been the clincher. Even the scaly skin on my ankles is gone. My doctor said the reason the bony parts of me are itching more than the others is because they don't have a layer of fat.

Anyway, good luck. You might want to get a shower head filter to make sure it is not chlorine.

Also check out mercola.com and search that site for Soy.

Anyone else with other autoimmune diseases? I have ITP (Idiopathic Thrombocytopenia Purpura), though I'm currently untreated and just fine. It is when the spleen decides to kill off all your platelets until you bleed to death. Great!

Now I'm thinking having Celiac all my life might've contributed to getting ITP.

I'm wondering what you mean by not being able to eat lots of fiber - like what specifically? That may well be a problem, I'm just trying to figure it out. Most people don't get enough fiber. I get most of mine through veggies like brussells sprouts, sweet potato, etc., and fruit such as avocado. I eat about four pieces of toast a day out of rice/pecan/raisin bread. Typically if I eat no fiber, I get C.

Other than popcorn, do you have any examples of what types of foods you're eating that are high in fiber?

I just noticed that I told you whenever I ate dairy (even small amounts) I would be able to tell due to the firming up of the old output. Then i told you I added back butter (in the form of ghee). Could it be I answered my own question?

I'll cut out the ghee for a week and see what happens.

Yeah, I have been diagnosed as IBS since I was a teenager, and they always tried to get me to take Metamucil or something like that. Well, I always have been a rebel, and thought a natural food that God/nature invented must be better - but it wasn't until two years ago I finally got the whole thing under control. Here's what I did.

1. went to Ayurvedic doctor. We have a good one in Bellevue, WA named Dr. Sodhi. He gave me a diet specific to what he read about my health through a thorough questionairre, and a type of pulse reading (it sounds nuts, but this guy is good!). He had me remove garlic, anything pickled, dairy, wheat, corn, soy, peanut (all the common allergins, really). - note, didn't quit dairy/wheat at this time.

2. quitting garlic made HUGE difference in the bloating gas. I know what you mean about bloat - I would go up three pants sizes, and go into the bathroom at work and just sit there rocking and crying - nothing to be done - or wake up in the middle of the night and literally crawl to the bathroom and do the same thing. Mind you, being in the bathroom made no difference since it was all C and gas and no action...but it seemed like the thing to do. So bloating was reduced, gas was reduced greatly by quitting garlic. My mother, it turns out, has this sameproblem.

3. every time I would quit something, I'd figure out that there was something else too - so even though I might feel better in one way, I'd notice other stuff.

4. FINALLY two years ago quit wheat and dairy. Was mostly cured of C and nausea and anxiety attacks. My poop was still weird, though..... (If I would cheat on dairy, I would get C the next poop.) (although now, I've added ghee, which is clarified butter.)

5. quit potatoes and poop normalized.

So now I've been diagnosed Celiac (I asked for the test to make sure I wasn't offing myself with spelt toast, which it turns out I have been). Now quitting oatmeal, which i ate a lot of.

I found fiber was ultra important - but I've also read for IBS that insoluable fiber is not friendly - you want soluable fiber. And if you do eat insoluable fiber, you should never eat it alone.

I hope you feel better. I have spent 35 of my 37 years in various levels of digestive misery...and these past two years of relative health have been so wonderful. Now if I get bloated it really knocks me out that I lived every day like that for years.

Take care of yourself!

I went to the Walk for Peace and Healing right after the Celiac walk. (Honestly, I was too tired and brain fogged to get to Seattle on time for the first walk - I live in Bellingham.) But the shirts were great; there were still some folks hanging about in them. I especially liked seeing the little kids running around.

Thanks to you guys. By next year I'm sure I'll have enough juice in the old blood stream to make it down on time. If you need more volunteers, or need someone in Bellingham to get folks down for the event, let me know.

I stopped using Canola Oil because I read on mercola.com that when it is heated up, it becomes terrible for you. In fact, the only oil that is safe to use for high heat cooking is coconut oil. Olive oil is fantastic raw (virgin - unprocessed oil) but once you heat it, it can become carcinogenic or at the very least, lose its goodness.

Coconut oil, of course, tastes like coconuts, and on some things, is really distracting, like on sweetpotato fries. But it actually tastes really good for frying salmon.

Anyway, I heard Canola is bad for you, so even if it is not the culprit, it's not the best choice for cooking either. Good luck!

You said you've eaten them before with no problems?

I've personally had the problem of finding a food I love and eating it all the time until it starts to bug my stomach. I did this with honey, I've done it with sesame bars...you name it. I have to try to control myself for eating something to death.

I'm reading the best book right now, "The Omnivores Dilemma" by Michael Pollen. He is a "natural history" writer, and here, he investigates the natural history of a fast food meal, an organic meal, and then a hunting/gathering meal. Anyway, the whole first section turns out to be about corn. It is amazingly interesting, and you'd be shocked to know how much corn you are eating if you eat processed foods.

Anyway, citric acid was mentioned many times as being derived from corn.

A good read for anyone interested in food; a must read for anyone interested in/allergic to corn.

Another problem with nightshades is that they require calcium to be digestd. This means that if you have not eaten calcium rich foods with the nightshade, it will leech calcium from your bones. This is important for vegans to understand, so they don't lose more bone mass - and many celiacs have osteopenia or osteoperosis too, so leeching anything out of the bones is a bad idea.

I quit eating potatoes because they were giving me all sorts of pooping problems, from one end of the spectrum to the other...and it worked. I got better.

IMPORTANT NOTE: sweet potatoes and yams are NOT nightshades; they belong to the marigold family. Yum!

And black pepper, the spice (and white pepper and green pepper corns) are not nightshades - they are a flower or seed from an entirely different plant.

I checked the website of the face lotion I use - Dr. Haushka's - and it had the 'answer' in a Q&A section. In that case, many of the cosmetics used wheat germ oil, but they claimed to have removed all the protein in the process. They mentioned a couple things that have gluten.

I don't know if other componies do this as well. I also have been Emailing companies, with varying results, about their products. You might try that. Otherwise, I'm too new at this for any meaningful advice.

Another reason some foods say "may contain" and then say corn, soy, wheat, whatever, is because companies will use whichever thing is cheapest at the time of manufacture. This is especially true between corn and soy, since both of those foodstuffs can be made into virtually anything. Basically, a recipe can handle various ingredients in a slot - soy protein or corn protein or wheat protein - since when they come from Midland or whatever company turned the "crop" into "ingredients", they are basically all the same "element".

Similarly, if their facility processes anything with wheat, nuts, corn, soy, etc., they may say "may contain" in case of cross contamination. I avoid those products entirely. I feel strange about eating something made by folks who aren't sure what's in it.

Thanks to everyone. I realized that when I described myself as an eater, I used the old abbreviated version I use to protect myself from someone feeding me chicken stock or cheese or something. Actually, I eat salmon/halibut and eggs, but no other animals, and no dairy. Oh yeah, I actually added ghee, clarified butter, back to my diet a month or so ago. So the B12 deficiency is absorption related, and I'm taking under-the-tongue B12 pills and did get one shot. I'm going to call the doc on Monday and say I'm still phenomenally tired and ridiculously stupid (did this brain fog thing drive anyone else nuts?).

I spent years with C and then it got entirely better when I quit wheat, dairy, and potatoes two years ago. In fact, other than being tired and itchy and full of canker sores, I had no obvious symptoms when I asked for a Celiac test last week - I just wanted to be sure I wasn't killing myself with spelt toast. Now I have the constipation again. My diet the past few days has been mostly protein, with not very many vegetables. I'm trying to figure out how to have some stuff ready for myself to eat since making veggies and rice or whatever three times a day is a pain.

Again, thanks for all your advice, everyone. I'm going to try the psyllium thing for sure, and I think I even have some magneseum in this house someplace - an old doc gave to me for getting rid of parasites.

You guys are awesome.

Okay...was diagnosed last week...so about a week gluten free. Always had the more constipation end of things. Already had quit wheat for two years, but not gluten. Am vegan too, have been for two years, vegetarian for 20 years before that. Needless to say, no iron or B12 in this girl.

Anyway, now I am having this most ridiculous poop - it is like sawdust and super hard to get out - to the point of causing me to bleed. I am going to eat some figs today (high fiber) and probaby buy some prunes or something...does anyone have any ideas?

Hi everyone! New here, and surprised to find others who can't eat nightshades, though really it is no mystery that they would make folks sick, since they are poison. I had eliminated virutally everything from my diet and was still having intestinal problems; then hit on potatoes. I should've known since I have not been able to eat cooked tomatoes without throwing up since I was a kid (always sick after spaghetti and pizza).

It sure is hard getting gluten free waffles and the like, since many of them are made with potato starch.

As to the spice pepper, it comes from the Piper nigrum plant, and is a seed. It is not a nightshade. Black pepper is harvested when the seeds/berries are half ripe, then they are let to dry. Green pepper corns are picked early, and white peppercorns are picked when fully ripe, then soaked in brine to get off the shell and release the white pepper. Interestingly, pepper sends a message from the mouth to the tummy telling it to start churning up some juices because it's about to get food. It is an appetite stimulant in that way. It also, apparently, hides the lack of freshnes of food, and was therefore highly valued in the Middle Ages when food might be scarce now and again.

Tobacco, though, is a nightshade.