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ALISHAB3's Photo ALISHAB3 SparkPoints: (17,248)
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1/25/10 4:08 P

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I know that this is an older thread, but I feel compelled to answer. I too have had a number of difficult health problems over the years (not dissimilar from your list btw.) and I was tested and found to not be a true celiac. In this country it is a narrow definition and the diagnosis is confirmed by a painful biopsy. My sister is gluten intolerant. Thats what made me suspicious when I became terribly ill last year around June. I had gotten sick in February with kidney sludge (like a stone only more in solution) and a kidney infection/bladder infection. They put me on a bad ass antibiotic. I never bounced back. In the summer I got the flu. I was terribly ill for three days. The fever, horrendous stomach/bowel pain and diahrea abated but the bowel never recovered. I got sicker and sicker. I felt like my small intestine was bleeding but because there was no blood in the stool, the doctors told me there was nothing wrong with me even though I could not eat like a normal person for months on end. I lost a few pounds but hey I'm insulin resistant and my fat cells are clever little brats! At that time I decided to try a gluten free diet because there is a high correlation between women with PCOS and gluten intolerance (not true celiacs.) I read online (not a scientific test to be sure) that 85% of us with PCOS are gluten intolerant.

Well color me dumbfounded, I had no idea. I was told ten years ago that I had PCOS even though I didn't have the ovarian cysts because of my facial/body hair, fat around the middle, and difficulty losing weight. I have been mistaken for a male in the ladies room because of my condition. (I shave now and use laser hair removal, still its traumatizing.)

So, fast forward to fall 2009/winter 2009 I was very slow to get better at all. I tried a lot of different things. Probiotics didn't seem to help me much. However, Triphala helped repair my gut and I'm now taking Marshmallow Root to help with the IBS like symptoms I get anyway. I do take those gluten enzymes if I think there has been a mistake (on my part.) and I seem to be ok with that. But that said, I don't see the advantage to going back. I mean, yikes, horrendous pain for months on end? I was reduced to eating a few cheese tings and Kefir. Otherwise it was the worst burning and cutting feeling you ever heard of. Everything hurt, including toast, saltines (all gluten, I hadn't thought of that yet.)

The sleep apnea is very concerning. I hope you have a Cpap machine, my dad got one and it is the difference between night and day. He is so different. He used to forget everything in the short term. Since the machine, he is like a real person. This condition is known to cause obesity btw.

The more I look at your list, the more I'm convinced that you are gluten intolerant at the least and a celiac sprue at the most. The treatment for either is a gluten free diet. So, I wouldn't bother with the diagnosis. It just seems like an unnecessary expense and irritation.

The ringing in your ears is probably insulin resistance. I have that too.



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GFNOMAD's Photo GFNOMAD Posts: 1,498
1/24/10 11:23 P

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I'm a lot behind in this thread. I'm still catching up after my trip and then the flu.
I CAN so RELATE to Margie's tale. I went through all of that in the early 1980's. Ok, I'm aging myself. But it is all so true. I still avoid a lot of foods, like grapes, grape juice, milk and too many others to list including any foods related to molds, fungus, etc. But I can have yogurt and some cheeses now.
I had what was then called environmental sensitivities. All chemicals, petrol and petrol derivatives like polyester and acrylic. I have only 100% cotton sheets, not permanent press or pretreated. I had to switch everything in my house, tearing out carpets, eliminating formaldehyde (which was in numerous things back then), new towels, clothing, etc. I've been able to relax a little over the years as to foods and some things. Our bodies are like a rain barrel. Fill it up with toxins, food sensitivities until the water in the rain barrel is sitting above the top ready to overflow. It takes only one drop to initiate it. I've always liked that image.
Our bodies are always changing too so we develop a tolerance to some things and intolerance to others.
It was really odd, that when I was in Argentina and Chile I could eat the peanuts (used the finger muscle resistance testing) yet I can't in North America. I think the difference is the mold level. I heard that there is a type of peanut grown only in New Mexico that does not have the mold. When I eat plums, I have to wash them (which you should do anyways) and then rub the cast (mold) off them.
That's only a small sample of the some of the things that rule my life. But never let it limit you. JUst work around it. I travel with a cotton pillow case and a silk sleep sheet which is very luxurious when I crawl into it between the hostel or hotel sheets. I was so delighted in the Buenos Aires hostel when I discovered the sheets were 100% cotton. Small blessings when many other things are so difficult. And people wonder why it takes me so long to pack. They have no idea how much preparation and planning goes into it.
Barb

Edited by: GFNOMAD at: 1/24/2010 (23:29)
Been to Tombouctou and back! Truely! (Timbuktu in English) photos and more Travel Adventures at www.flickr.com/photos/cdnnomad/sets
Recognizing Celiac Disease www.recognizingceliacdisease.
com/21.html

10 Tests that could save your life www.50plus.com/health/10-tests-that-
could-save-your-life/1676/

Dr. Alejandro Junger - 'Healing the gut' (from Dr. Oz) www.doctoroz.com/videos/3-day-jumpst
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DOTSLADY's Photo DOTSLADY Posts: 10,018
1/7/10 8:52 P

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Margie - you're the canary in the coal mine, aren't you? Most people shouldn't eat half the stuff they do, right? You've got a lot to share/tell, thank you for sharing so others can see not only that you have perseverance, but that they might consider these avenues for themselves. They may not know. I remember when I first started reading over at celiac.com some people seemed so crazy about food - but now I've learned how true it can be. I hope others are "open" as they read these stories.
emoticon

Stacy - sorry, didn't see this til now. I have to admit I didn't know about FDA involvement into approving tests. Mainstream or allopathic doctors have a celiac panel with IGG IGA etc, and I think it's widely accepted within, but FDA? Huh. Didn't know. FWIW at this point, tests are listed from different sources (universities and labs) at www.glutensensitivity.net , see an upper header.

For comparison's sake I'll tell you my ferritin was 5, my hemoglobin low but normal range. My thyroid at time of diagnosis was too high, but not much. At different times the past four years, or since dx, my thyroid's been high at 7 and 15ish. Both times my hair loss was greater as you'd expect.

Did doc check free T3 and free T4? What was your ferritin? I got lucky on having an iron PANEL when the doc ordered it -- I can't believe, now that I know what I know, that all the time I complained of fatigue that it wasn't checked before (esp since once or twice my hemoglobin was below normal). sheesh.

Did your gastro take pics or video? I have color pics and a graph of biopsy sites, and in their files there's a video (I think).

My father's side of the family has thin hair. One aunt has RA. One aunt must've had low folate as my cousin has spina bifada. All the men are bald. My grandmother and grandfather had thin hair. My grandmother had an "allergy" to wheat I found out a year into gf living and asking stories about family medical history. What a baker she was and I have the typical fond memories of baked specialty breads and a specific annual cake we'd eat at Christmas - a spice cake to die for. Anyway, she used to wear a wig. When I brought up alopecia to my RA aunt, she said she always thought Grandmother wore a wig and then she went baldish. Um, no, she wore the wig BECAUSE she was baldish. We never really knew her without it and it just "was." I was always paranoid I'd become bald, but I never realized the "whys" of it.

Glad the omega-3s I take is helping my hair, too, then! Didn't know that!

Thanks for keeping us in the loop.

Edited by: DOTSLADY at: 1/7/2010 (20:59)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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STACIARN01's Photo STACIARN01 Posts: 114
12/30/09 8:52 A

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Hi Dot,
Thanks for responding. So, I had the bloodwork drawn yesterday. The PA that I saw said that the "Casein" allergy test that I had drawn this Sept. was not approved to be a diagnostic tool according to the FDA. The tests that I had drawn yesterday are also not approved apparently...I believe it was IgG and IgA that I had drawn. I guess I am going to have to trial and error this on my own. She also told me that the GI doctor (which I work with at the same hospital) did look at my duodenum and saw no true abnormalities of the appearance so he decided not to take any biopsies of that when he was in there??!! This particular doc is usually quite thorough with his patients and I am surprised that he bascially told me that I have mild IBS and lactose intolerance....
I have had the iron studies and TSh drawn to see if that was a contributing factor to my hair thinning and they were fine. Genetics is a not so beautiful thing sometimes. My mother and her mother have very thin hair as well. So, I read in my Prevention magazine about the Omega-3's being helpful to hair and brain and of course heart function. I just have to find one that doesn't make me burp fish:) The secretary I worked with found her celiac disease dx by having typical iron studies as well!

You have been such a great help with this puzzle! I thank you all for your time!!

The new post was interesting regarding all the things she is sensitive to!! My goodness...good luck with your journey!

Talk to you all soon.

Stacy

SW 138.4
CW 134.2
GW 130 9/12
Seems reachable right!?


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MARGIE100%PURE's Photo MARGIE100%PURE Posts: 1,514
12/29/09 5:55 P

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Hi Team, Happy Holidays. I was still very ill after going gluten-free and wondered if do it was enough. I am now on the journey to explore-feel-and try to explain where I was to the glorious here I find myself right now. I am delighted to have been encouraged to challenge gluten in my diet by Dots and the Team. I was seeing improvement but there were still many hidden forms of it in other consumables. I now understand that I am gluten intolerant as the tests come back negative. And further searching using the challenge diet and other knowledge and tools has revealed other food allergies and intolerances to add to a more complete no-no’s list and a more feels good real food diet for me. I have only one prescription a thyroid hormone, Levothyroxine.

I am gluten intolerant with or without a positive answer to the lab tests. I have been researching truly everything that I eat; when I practiced care with my foods I then questioned all my supplements. Here was a nightmare as all over the counter commercial supplements; vitamins and minerals I was using to supplement my diet I found lots of hidden things listed and unlisted in the very thing I was told to take by my doctor. It is like a conspiracy in which the vitamins, minerals, and hormones that make up the human condition must be clouded and crowed with fillers, colors, flavors, and know that ‘I’ can not consume food with stuff not intended to be in my food. But how do I share these true dry facts to the establishment that make them. I am not a majority. They will not listen or change the profits are sound according to them. How do I tell them that 1/100 part per million of a sulfite does harm me. It has been proven to me that the very nutrients of the body needs for good health are tainted so I must avoid their help. I believe thousands of other people may have the same problems but the medical, agricultural, commercial and governments of the world are not stating the facts as I know them. I take in clean and in the purest forms of vitamins and minerals. Pharmaceutical grade without added things is all my body will tolerate.

I can have real food whole food and I must prepare it myself. I do not eat in restaurants and bring my food in a simple lunch box to attend holiday events. I am beyond Gluten-Free!

I have an intolerance to sulfites found naturally in some foods like beets and beet sugars, molasses, grapes and cream of tarter and baking powder made from grape seeds. Sulfites are artificially in and on most other foods. Like the odorless-tasteless gasses that can kill so can a hidden thing in my food harm me. I go into (only mild so far) anaphylactic shock; which I endure at home. There are no pain relievers I can have! Even the EPI pin of epinephrine or benedryl has additives to cause pain to me. I know that to be alive is to require a shot of pain in which to stay alive but the medical community only have a few elite like ‘Dr House’ who would recognize my needs and problems. I bought a can of water chestnuts the other day. The label read ‘water chestnuts, water.’ Boy was I surprised at my reaction to the innocent of a crunchy vegetable that came out of a can I had eaten. I know my routine and I thoroughly know too well (three hard years of challenge diet research) my limited food choices and can spot a wrong food even if some of the symptoms do not rear their ugly heads until 2-3 days later.

My main point is… Thanks to the successful first step of removing gluten from my food choices…….I learned the techniques of food challenge so could I have some relieve. Also thanks to still be alert to my need to dig deeper and discover that corn, vinegar, fermented foods like green tea, artificial sweeteners, and anything ‘caramelized’ should not be eaten by me. Another no-no for me is citric acid. Citric Acid, an added thing made usually from a yeast bi-product, is added to even organic foods. One can of diet or regular or Club soda would blow my gut out of balance and sabotage any diet I ever started.

Thanks Team for guiding me to become a better me!
emoticon emoticon

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I may not recognize the significance until some time later.
Is my resistance to change really that strong?
Impatience does not provide the time to learn the lesson;
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DOTSLADY's Photo DOTSLADY Posts: 10,018
12/28/09 11:21 A

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Best wishes to you re: the test.

Re: thinning hair, have you looked at your serum ferritin? Or have you checked thyroid function? Seems obvious, but it wasn't to me until I started looking .... ran into a book at the library about hair loss for men, and the ferritin idea came about. Bingo for me anyway. Ferritin's the whole reason I got an endoscopy: my PCP sent me to gastro, as he thought I may be bleeding internally. bit.ly/6BStzj

I never heard of the "casein" test, so thank you for saying. An "allergy" test? Were other allergens tested along with it? I've not heard of a single test. I'm afraid I don't understand :P.

I took 5000mg of biotin/day for a while (a couple of months at least or however many was in a big bottle of Origins brand from Target) and REALLY noticed a difference in my nail strength; I thought it helped with retaining, but not growing new hair, though.

Keep us posted, won't you? :)

Edited by: DOTSLADY at: 12/28/2009 (11:31)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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STACIARN01's Photo STACIARN01 Posts: 114
12/28/09 9:23 A

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Thank you so much for all the info!!
I am going to call to get the bloodwork set up then.

I had to test to be sure I was absorbing B vitamins becuase I have had hair thinning over the past few years. I take Biotin 500mcg daily along with a multivitamin,vitmain D3,extra zinc during the winter months.

The casein allergy test was named "casein" I believe. I wished she would have done the celiac panel at the same time though. So, again thank you for all of your assistance and guidance in this matter. I really appreciate it.

Stacy

SW 138.4
CW 134.2
GW 130 9/12
Seems reachable right!?


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DOTSLADY's Photo DOTSLADY Posts: 10,018
12/22/09 4:17 P

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Hi Stacy emoticon to the team.

You said, "I have had bloodwork to prove that I am not malabsorbing my vitamins,"

Can I ask what tests others would ask for?

and you asked, "but to my surprise I DO have an allergy to Casein (a milk derivitive)...this was a suggestion from my OB/GYN that has Celiac.... "

Also, what test showed casein protein allergy?

You said, "So, if the lab work isn't sensitive enough...should I still pursue getting it drawn?"

By labwork, do you mean a Celiac Panel? Personally, I would say yes, absolutely get a celiac panel before changing your diet.

You asked, "Would the upper endo have shown anything if he wasn't looking for it?"

Re: your question about whether the gastro would necessarily "see" damage during endoscopy, the answer would be no. Villi damage can be spotty, also, some w/celiac do not have positive biopsies but do have positive blood labs (and vice-versa); and some with gluten intolerance have negative tests to both.

I've read it's recommended if biopsies are done, to have the gastro clip SEVERAL, if not more biopsies, and in different places. Sometimes they only will clip two or three. Even after you ask them to do more, they'll only do two or three. THEN you have to make sure the pathologist is a good one. However, I can tell you my gastro DID see scalloping in my duodenum.

Here's a generic pic of an inflammed duodenum: bit.ly/8lIXTf

And a normal one: bit.ly/4peqPn

Here're more endoscopic pics:
img.medscape.com/fullsize/migrated/
559
/057/ajg559057.fig3.gif
(this gif link doesn't work. you can access the pic from the below article link - click on figure 3.)
Flattened villi (A), loss of folds (B), scalloping (C), nodularity (D), and whitish villi (E) were observed in patients with REFRACTORY (non-healing) celiac disease.

from article: bit.ly/54PCxU

A very good place to dive into reading about gluten issues would be www.glutensensitivity.net .

Also, a couple of days gf diet won't necessarily change the constipation ... I'd suggest it'd take longer, but it also depends on your diet of course.

*****
I found good article re: casein vs lactose if anyone's interested:

www.foodintol.com/dairy.asp






Edited by: DOTSLADY at: 12/22/2009 (16:26)
KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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FITCHIC8's Photo FITCHIC8 Posts: 187
12/20/09 5:31 P

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I believe that both the casein (protein) & the lactose (sugar) could be the problem. What you said makes sense to me AIMINGFORGOAL. I think it depends on the individual too.

"Be Happy Healthy & Stong!" ~Lauren
AIMINGFORGOAL's Photo AIMINGFORGOAL Posts: 28
12/20/09 3:05 P

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I'm just learning lots too, but I thought the way I understood it was that usually in CD or gluten sensitivity it's the casein in milk instead of the lactose that we might react to.

The way I understood it was the gluten (which is a protein) damages the villi and since milk protein (casein) is so hard to digest, we sometimes have trouble with dairy until our intestines heal.

Does this make sense? If I'm wrong please correct me! There's so much to learn!! :0)

AIMINGFORGOAL

If God brought me to it; He will bring me through it!


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STACIARN01's Photo STACIARN01 Posts: 114
12/20/09 12:53 P

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Hi everyone!
My name is Stacy and I have recently discovered quite a few months ago that I have a lactose intolerance and a mild IBS issue. I have had these debilitating gas/bloating pains on/off for nearly 10 years (the first one I had was in July 2000..I will never forget it). Because I was too busy finishing up with college I never went to a doctor for these pains, I just took gas-x(simethicone) or maalox, layed down on my stomach with a pillow and sometimes after 30-60min the agonizing pain would subside. At the time I couldn't really associate it with any particular food....my friends all thought it was anxiety in public situations,but that wasn't the case!
I got fed up last March and saw a GI specialist and had an upper endo done...which showed nothing and of course I don't think he was searching in there for the possiblity of Celiac or a Gluten sensitivity. I didn't even really know that existed. (I am a nurse,but I haven't even had any patients with this diagnosis). So, I tried only a few days of GF recently and felt no bloating or pain,but still had a few issues with my constipation. I have had bloodwork to prove that I am not malabsorbing my vitamins,but to my surprise I DO have an allergy to Casein (a milk derivitive)...this was a suggestion from my OB/GYN that has Celiac....

So, if the lab work isn't sensitive enough...should I still pursue getting it drawn? Would the upper endo have shown anything if he wasn't looking for it?

Thanks for letting me share my story....have a great day!

Stacy

SW 138.4
CW 134.2
GW 130 9/12
Seems reachable right!?


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FITCHIC8's Photo FITCHIC8 Posts: 187
12/20/09 12:45 P

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Thank you DOTSLADY! I read & understood it but I have similar reactions to dairy. I have for years, once I have been gluten free for a while, I will definitely give dairy a chance in small amounts. My body isn't ready for that yet. Thanks !! emoticon

"Be Happy Healthy & Stong!" ~Lauren
DOTSLADY's Photo DOTSLADY Posts: 10,018
12/20/09 2:08 A

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I LOVE yogurt daily myself Desertflower. I'll eat other dairy only occasionally - cheese/fruit, but haven't had milk in a looong while. Here's a question for you: Have you ever had allergy tests done?

Lauren: it sounds like dairy free is a habit now and you're happy with results and all. But what Desertflower says is true, and I wonder if you understood it:

www.celiac.com/articles/31/1/
How-is-la
ctose-intolerance-related-to-
celia
c-disease/Page1.html


Your villi may have been damaged by gluten all these years. The longer you're gf, the better chance to heal the villi and again be ABLE to digest lactose/dairy. If you're dairy-free for other reasons, fine, but know that the option could again be out there, k? I was unclear if you'd read that at all.
emoticon

KNOWLEDGE = POWER. BODY = TEMPLE. FOOD = MEDICINE. PREVENTION IS THE CURE. YOU ARE WHAT YOU ABSORB!
One person's food is another person's poison.
__________
Celiac Disease: An autoimmune reaction from eating gluten grains: wheat, rye, barley and contaminated oats=nutrient deficiency=cancer. Have 1 of 300 symptoms? bit.ly/cdsymptoms
CD stories: bit.ly/cdstories
Nutrition/Cancer: bit.ly/Quillinnutrition


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FITCHIC8's Photo FITCHIC8 Posts: 187
12/19/09 12:48 P

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I was 13 years old when I found out I couldn't have dairy I have found Lactaid Brand & Dairy Ease brands wonderful because they are made from real milk but the lactose has been removed /counteracted with lactase so its safe :) Makes it a lot easier :)

"Be Happy Healthy & Stong!" ~Lauren
FITCHIC8's Photo FITCHIC8 Posts: 187
12/19/09 12:47 P

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No problem AIMINGFORGOAL :) Anything I can do to help! I have been dairy free for years, so please feel free to ask questions :) Also can message me anytime & we can share ideas !

"Be Happy Healthy & Stong!" ~Lauren
DESERTFLOWERG's Photo DESERTFLOWERG Posts: 1,437
12/18/09 7:32 P

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I feel lucky. Dairy doesn't seem to bother me and I eat yogurt every, every day. I really did not mind going gluten free - I mean I don't miss the big things like bread, pasta, cakes, cookies, crackers, at all (but it is a pain playing detective all the time to avoid the hidden gluten in other products). I miss Pizza, but I prefer pizza toppings on slices of eggplant anyway. BUT, I really would have a hard time if I also had to avoid dairy. I've read that for some people who seem to be lactose intolerant, that intolerance goes away after they have been off gluten for time enough for healing to take place.


Desertflower
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When it's time to die, let us not discover that we have never lived . . .
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USE2BAGODDESS's Photo USE2BAGODDESS Posts: 2,703
12/18/09 7:15 P

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I resisted going Dairy free as long as I could. I'm sorry, but I like, no I Love cheese. And cream, and sour cream, cottage cheese, etc...you get the picture.

If I didn't feel so good off of it, I'd be eating a big hunk of cheese right now. Then I'd..toast..(breathe deep!! cheese is bad...cheese is bad...cheese is bad)

OK, I'm back!! LOL

How have you gone 11 years without the stuff? Veggie shreds are good. I use to use them until I found out how bad soy products are for your thyroid gland and I now have hypothyroidism and avoid all soy.

So far Hemp Milk has been a good smooth addition to my smoothies and shakes when I want to use something creamy.

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AIMINGFORGOAL's Photo AIMINGFORGOAL Posts: 28
12/18/09 6:34 P

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Hi Lauren,

I'll take all the help I can get! I've never tried those products, but I'll look for them!

Thanks!

AIMINGFORGOAL

If God brought me to it; He will bring me through it!


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FITCHIC8's Photo FITCHIC8 Posts: 187
12/18/09 5:27 P

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I've been dairy free for 11 years & went gluten free this year. I find that I benefit a lot from being dairy free. I like the Veggie Shreds shredded "cheese" and Dairy Ease & Lactaid "milk". Hope this helps!

"Be Happy Healthy & Stong!" ~Lauren
AIMINGFORGOAL's Photo AIMINGFORGOAL Posts: 28
12/18/09 5:16 P

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I know I'm doing dairy right now, but am considering going back to almond milk...see if that helps me even more!

AIMINGFORGOAL

If God brought me to it; He will bring me through it!


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USE2BAGODDESS's Photo USE2BAGODDESS Posts: 2,703
12/18/09 1:10 P

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I am glad to hear that going GF has helped you so much!

Sounds like it is a relief for you to find relief after such a long time of suffering!!

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USE2BAGODDESS's Photo USE2BAGODDESS Posts: 2,703
12/18/09 1:09 P

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My celiac test came back negative yet I know gluten bothers me. I have been on an Elimination diet for a couple of weeks now (veggies, protein shakes) and have eliminated everything else trying to give my intestines a chance to heal. I am finally feeling MUCH better.

Now, I just have to figure out exactly what else is bothering me. Clearly, I am allergic (or have a problem with) to more than just gluten!

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AIMINGFORGOAL's Photo AIMINGFORGOAL Posts: 28
12/17/09 5:04 P

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Thanks for your responses. Thanks DESERTFLOWERG--that was exactly what I was looking for. I know I feel better when I follow a GF Diet, but didn't know if there was any benefit in testing Celiac. My GP said if I felt so much better following GF to just continue and don't worry about the tests.

It's also interesting that you had the tests and still came back negative, BlueRose.

I was just curious about what those with Celiac would think.

Thanks again!


Edited by: AIMINGFORGOAL at: 12/17/2009 (17:09)
AIMINGFORGOAL

If God brought me to it; He will bring me through it!


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BLUEROSE73's Photo BLUEROSE73 SparkPoints: (116,864)
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12/17/09 3:29 P

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Welcome to Sparkpeople. Be sure to take advantage of all the great free online sources available here, such as the nutrition and fitness trackers. Also, the online community is great. We are all here to offer support when you need it, or celebrate your successes with you.

Here are some links that will help you navigate the site and get started!

* SparkPeople's User Guide:
www.sparkpeople.com/resource/user_gu
id
e_ALL.pdf


* New Member Tutorial Videos:
www.sparkpeople.com/resource/motivat
io
n_articles.asp?id=571


* FORUM: "What Advice Would You Give to a New SP Member
www.sparkpeople.com/dietforums/archi
ve
_posts1-1163062-1.htm


* For Additional Motivation:
www.sparkpeople.com/resource/motivat
io
n.asp


Take this first week to familiarize yourself with the tools here. Once you get used to using them, it becomes easier to use them even when you are busy. Personally, I spent my first week learning to use the tools, and just tracking everything I was already eating and doing for exercise. It gave me a baseline to work from. It also gave me a chance to really decide what my goals were, and how to get there.

I too struggled with health problems all my life. In the past year, they were getting worse and worse. I finally gave in and went GF. I have never felt better. Before I went GF, I did undergo a celiac test that came back negative.

I no longer care what medical science has to say on the subject. No more gluten for me. PERIOD. Don't really care why. Just care that that's the case. I feel better. That's all that matters to me.

Katrina
Saskatchewan Time Zone

You can not change yesterday - it's done.
You can only dream of tomorrow.
The only day you can change is today.
What are you going to do today to reach your goals of tomorrow?

It's supposed to be hard. If it wasn't hard, everyone would do it. The hard is what makes it GREAT

Go little Turtle Go!


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DESERTFLOWERG's Photo DESERTFLOWERG Posts: 1,437
12/17/09 12:23 P

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"Would you think my systemic symptoms and "GF Cure" tend to lean toward me having Celiac Disease?"
Yes.
If, I was in your place, I would consider myself as having a confirmed diagnosis of celiac disease and live my life accordingly. Oh, yeah, I am in your place and have been for a couple of years.

For me, not having an "official" diagnosis these last couple of years has had no downside whatsoever.





Desertflower
5'5"


When it's time to die, let us not discover that we have never lived . . .
Henry David Thoreau


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FITCHIC8's Photo FITCHIC8 Posts: 187
12/17/09 10:59 A

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Hello! I too have been diagnosed with Fibromyalgia (17) & IBS ( when I was 13). I went gluten free in November after having been to Dr.'s and emergency rooms for severe abdominal pain & not being able to eat without getting sick. After going GF not only is my stomach better but a lot of my other health problems are getting better too. Since I have the diagnosis of IBS Dr.'s haven't wanted to do other testing or investigate farther, so I stick with what works for me. I find if I eat even a salad dressing or food with the tiniest bit of gluten in it, the severe fatigue & abdominal pain comes back, so I remain gluten free.... :)

"Be Happy Healthy & Stong!" ~Lauren
DJ4HEALTH's Photo DJ4HEALTH Posts: 40,943
12/17/09 1:12 A

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You asked what are the benefits of not eating gluten well you answered that in your post before you asked your question.

"My symptoms are varied: neurological (several
doctors have thought I had MS, but no lesions--just
memory loss, fuzzy thinking, numbness, muscle tics,
drop foot, droopy eye), dry mouth, eyes, and skin;
very high inflammation levels, extreme fatigue,
diarrhea/constipation, stomach cramps, bloating,
vomiting, swollen and painful joints, changes in my
nails, ringing in my ears, muscle pain, skin rashes,
anemia, vitamin deficiencies, and probably more that have slipped my mind!"

My question to you is do you want these symptoms or do you want to be free from them. You should know that even if you get tested you might test neg for gluten. Those tests are not very accurate either. Plus you have to be on gluten to get these tests and then you might still test neg but have the symptoms of CD.

Dorothy

If you tell God no because He won't explain the reason He wants you to do something, you are actually hindering His blessing. But when you say yes to Him, all of heaven opens to pour out His goodness and reward your obedience. What matters more than material blessings are the things He is teaching us in our spirit.
Charles Stanley



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AIMINGFORGOAL's Photo AIMINGFORGOAL Posts: 28
12/16/09 11:33 P

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Hi!
My name is Becky and I'm so glad I found this site. I was using it just for weight loss/fitness for a week or so and then ran across the Celiac Teams. Boy, am I glad to find those!!

I'd like to tell you about my health history and ask a question, if I may. I have had many health problems for the last 35 years, since I was in my early twenties. I've gone to many doctors, having multitudes of tests during that time. Not one doctor has ever suspected Celiac Disease.

After more than twenty years, I did start to get
some diagnoses: Fibromyalgia, Chronic Fatigue,
IBS, Iritis, Diabetes, High Blood Pressure, Cardiac
Artery Disease (2 heart attacks in 2004 resulting in
3 stents in my heart), Osteoarthritis, Depression,
Sleep Apnea, Obesity...

My symptoms are varied: neurological (several
doctors have thought I had MS, but no lesions--just
memory loss, fuzzy thinking, numbness, muscle tics,
drop foot, droopy eye), dry mouth, eyes, and skin;
very high inflammation levels, extreme fatigue,
diarrhea/constipation, stomach cramps, bloating,
vomiting, swollen and painful joints, changes in my
nails, ringing in my ears, muscle pain, skin rashes,
anemia, vitamin deficiencies, and probably more that have slipped my mind!

My question is this: When I suspected that Gluten
was a problem for me and went on a GF Diet many of
these symptoms went away too. I have energy, think
clearer, am SOOOO much more positive, am losing
weight, and my fingers and ankles don't hurt or
swell anything like they used to.

My question is this: Would you think my systemic
symptoms and "GF Cure" tend to lean toward me having
Celiac Disease? What is the benefit of knowing for sure, rather than just calling it Gluten Sensitivity?

I will not go back on a gluten challenge for testing.
The last bout I had was too much for me!

Thanks for any help you can give me!

Edited by: AIMINGFORGOAL at: 12/23/2009 (19:02)
AIMINGFORGOAL

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