Sliding Backwards

[marycubs]

Hi all -

I've not been an active participant - but periodically come in to read your wisdom (usually when I'm feeling down). This site and the people who contribute really are wonderful.

I was diagnosed May 2005 and have been gluten-free except the errors along the way. I am committed to the gluten-free diet. After going gluten-free last year I felt much better for a few months. I'm still better than I was a year ago at this time...but feel like I'm sliding backwards.

I'm really not bummed about the diet - I can handle that. It's that I am soooo tired of feeling tired and having no energy. I'm 42 and feel 88 energy wise. I also am still having D - but not to the extreme that I had a year ago. I was anemic, and my levels have increased - but still on the VERY low end of the scale. So, I'm on iron supp, multi, D, B12, and Cal-Mag (all gluten-free). I see a Dr. who keeps a check on my levels..and checked my thryoid recently - said I'm not hypo, but on the low end of the scale. I now have high cholesteral (never had a prob before) and she wants me to start taking Lipitor. I've recently been diagnosed with premature ventricular contractions (heart palps are waking me up at night). Again, the Dr. says they aren't an issue -very common - but one more new thing. I see a therapist for depression (related to other life issues - empty nest, lousy job, broken heart) It's been a tough year. BUT I am making positive changes - going back to school & I bought a new home.

After reading a post below - I've decided to go back to veggies/fruits, plain meat. I've been eating too much rice & potatoes. I'm also going to start probiotics. I also just bought Dr. Green's book.

I guess my question for you all is did your energy levels improve in less than a year ? Should I still be experiencing D - (and still always floating) ?. The GI that did the biopsy said my damage was 'significant'..so perhaps I'm just not being patient.

Any help/encouragement you could provide would be appreciated.

thank you !!

Mary

[Lollie]

Hi Mary! I wanted to reply for a few reasons:

1. You said you are haveing heart palps at night, well my mom has them to the point of heart attack but has suffered with them for years in the form of not so bad, she recently did a sleep study and found out she has sleep apnea, which causes the palps. It might be worth looking into.

2. Your energy level may well be from the the palps too. My energy level is better but not what I would like for it to be after 3 months, but I had no real damage, according to my doc. I think it could just take time for your body to heal.

3. D will definantly drain you.

4. Depression will also take all your energy and lack of energy is one of the symptoms.

I would try to get as much sun light as you can, this actually aids in depression and might help in the energy level. And really, I ould look into a sleep study, I had no idea how much sleep apnea could effect your body. I'm going to see about having one myself!

Hope some of this helps!

Lollie

[jerseyangel]

Hi Mary--It is my understanding that healing can take from 6 months to 2 years or more, depending on factors such as amount of damage, length of time sick, individual healing rates, etc. I am 9 months into the diet, and I still have fatigue as a symptom. I get on average 8 1/2 hours of sleep, but still feel tired most afternoons and am ready to go to bed at 7PM! I don't get D much anymore unless, of course I get glutened, or eat another food that I'm sensitive to. Maybe you have additional food sensitivites? Are you sure that all of your personal care products are gluten-free? Those are a couple of things that come to mind about the D. I think it's a good idea to go back to basics in terms of foods and then you can add things back in one at a time to see if any are a problem. I did that and found out that I do not do well with any of the grains. Keep reading here--and best of luck

[Ursa Major]

Hi Mary,

I've read just recently (and actually, I've read it in several different places, as I do a lot of research) that women with HIGH cholesterol live much longer on average than women with low cholesterol. Lipitor is a terrible idea, as it has been linked to all kinds of problems, including heart attacks. And another thing, the cholesterol you ingest in your food is NOT turned into cholesterol in your body. Your body can't function without cholesterol, every cell in your body needs it. Your body will make cholesterol if it doesn't get enough from food sources. And actually, LOW fat diets are causing heart attacks. The fats to stay away from are trans fats, like hydrogenated or partially hydrogenated fats. Those are definite killers.

Low potassium levels (caused by diarrhea) could be causing your heart palpitations. That happened to me last summer when I had chronic diarrhea. They are frightening, but don't indicate a problem with your heart directly, but rather a nutritional deficiency. By the way, bananas don't contain that much potassium, one of the foods with the highest levels are watermelons! Last summer, because I couldn't tolerate any supplements, I ate lots of watermelons, and my potassium levels went back to normal. And the awful palpitations and the periods of heart racing (up to over 200 at times, doing nothing) stopped.

You either still get gluten from somewhere, or you probably have other intolerances as well. Most people with Celiac disease will be dairy intolerant, too (at least initially, until the intestines heal sufficiently to be able to tolerate dairy again, but many for life). Dairy will give me glutened symptoms (like diarrhea and stomach ache), and so will any grain, as well as eggs. I found out I have a lot of other intolerances (follow my links on lectins and salicylates if you want to find out more).

I know that it seems more than enough to deal with to just get rid of all the gluten sources in your life, but many of us find that once the intestines start healing, other intolerances show up. It's not that the diet causes them, its just that you can now differentiate between which symptoms are caused by the gluten, and which ones by other things. Plus, now that the intestine will absorb nutrients again, it absorbs not just what you need, but also what you can't tolerate. Or so goes my theory.

So, I am afraid that you need to resign yourself to having to be your own guinea pig, and do a little experimenting to find out why you are having problems. And doctors know woefully little about these things, all they can usually think of is to throw expensive and useless medications at you. I would NEVER consider taking Lipitor! I hope you won't be offended, I tend to be blunt and to the point.

[sparkles]

About the high chloresterol, mine was about 220 before being diagnosed with celiac disease. The doc tried Lipitor, I had the muscle reactions and stopped...never went back on a drug for it but my chlor. dropped to about 140 in 2 years. I think it had to do with the celiac disease. As my body healed, other things healed also. I also started using Smart Balance and it says right on the label Gluten Free. If you have a choice, give your body a chance to heal. I went gluten-free in June of 2002 and it takes years before the damage is repaired and even if you try to stay gluten-free, let's face it, gluten still gets in the diet and it is always two steps forward and maybe a half step back. I am still tired...though not as bad as before the gluten-free days....but at least now I can get up and not think about when I can take a nap! Good Luck!

[ms-sillyak-screwed]

Hope you are feeling better!

I'm stuck on SOY today -- What I mean by that is SOY IS POISON for those of us with a thyroid problem. SOY is in everything. I spent all day yesterday will Walmart food allergy phone lines to find out VEGGIE BROTH in tuna fish packs are SOY.

What has helped me a lot is baby PEDIALYTE oral electrolyte. If I have steatorrhea diarrhea (peeU just thinking of it) PEDIALYTE oral electrolyte will make me feel like I have blood in my veins again. It's helps me when I feel a seizure comingon from toxic foods or etc. It really really works -- try it.

The other things that helps me a lot is shots of B12, Folic Acid and Pantothenic Acid. Vitimin pills don't work for me so well, because my digestion won't absorb them. And the vitamins have SOY in them or some type of filler binder that has corn in it. I can't tollerate corn either.

I can't do dairy or corn or night shade veggies. Click on the links in Ursula's postings. It's great very informative about LEGUMES. I have the same problem too. Didn't know it until after I had the tyroid problem I've been Gluten free dairy free for about 5 years, and throught I was getting better but the soy (legumes) were counter productive and I was doing more damage to my insides and had no idea until someone here brough it to my attention, that many of us have that problem too.

Also the drugs you are taking my have gluten, corn or other binders making you sicker. Look into a COMPOUNDING RX. They will make up your med free of what might be posion.

Keep a food/body journal of everything up put into your mouth on/in your body. It helps me find answers, time consuming but more so helpful.

Be well...

[marycubs]

Thank you all so much for your ideas.

I hardly slept last night due to D, stomache pains, etc...so it was sooo great to read your messages this morning.

Lollie - thanks I will check on the sleep apnea. I didn't know that could be associated with the palps.

Ursula - I never would have thought of watermelon as a source of potassium ! I do have concerns about Lipitor as well (or taking any other new drug at this point). I feel like my body must be adjusting and that is why my cholesteral has suddenly shot up.

And Ms. Sillyak the pedialyte is a great idea too... I will give it a try !

I think you all are right - I need to get back to basics - eliminate and keep a food diary to figure things out. While I like my Dr. (at least she knows what celiac disease is - unlike my previous Drs.) she doesn't look at the whole picture -but seems to treat each symptom/problem separately.

Thank you again for your suggestions -

Mary

[TinkerbellSwt]

I see all the wonderful ideas in this thread to look into for myself as well. Just a problem that I have is that I cant take vitamin B12. My body just cant do it. Even in multi vitamins, if its in there, I get sick. I know a few people who have this problem, so maybe its a problem for you too. Just a quick thought. I hope you feel better soon!

Tinkerbell

[loraleena]

If you are on the low end of the scale you are probably hypo. Do not believe what your doc is saying. Get you thyroid peroxidase antibodies checked also. They should be below 40. Mine were 755, meaning hashimotos hypo. Please get on Dr. Lowe.com to learn more about all the misinformation doctors are spewing about thryoid. Everyone is different. Low end may be fine for someone else, but for you may be bad. Also get you adrenals checked as well. Good luck.

If you are on the low end of the scale you are probably hypo. Do not believe what your doc is saying. Get you thyroid peroxidase antibodies checked also. They should be below 40. Mine were 755, meaning hashimotos hypo. Please get on Dr. Lowe.com to learn more about all the misinformation doctors are spewing about thryoid. Everyone is different. Low end may be fine for someone else, but for you may be bad. Also get you adrenals checked as well. Good luck. You sound like classic hypo. Hypo can give you high cholesterol as well. Do not take lipitor. It is crap. You should read the Natural Cures book.

[beelzebubble]

i totally agree. i've had something similar happen to me and there was some confusion about what my thyroid levels meant. as far as the palps go, i have found that a few things help: uppage of my thyroid meds, taking potassium, a multi, b complex, a sublingual b-12, and magnesium on a daily basis, stress management techniques, and lastly trying not to eat anything too close to bedtime. i make sure i drink enough water as dehydration can contribute.

from what i understand, it's likely that i have mitral valve prolapse that was aggravated by my wacky thyroid levels. it seems to be a bit better since i changed my thyroid dosage and started my regime . anyway, here's the link to my message about my palp issue. hope it helps.

Open Original Shared Link

[Fiddle-Faddle]

Hope you are feeling better!

I'm stuck on SOY today -- What I mean by that is SOY IS POISON for those of us with a thyroid problem.

Holy heck, Ms. Sillyak, I didn't know about the soy/thyroid connection! I do a lot of stirfries with--you guessed it--soy sauce AND Tofu. Oh, boy.

Just out of curiosity--does anybody know if Asians have a high or low incidence of thyroid disease compared to Europeans? Their diet is so high in soy (and I'd always assumed that it was a GOOD thing!).

[ms-sillyak-screwed]

Fiddle-Faddle -- intersting comment about soy. My DaddyO said the same thing that Asian's and japanees (sp) eat alot of soy. Soy sause had wheat gluten in it. I don't know but their digestion is different they don't do milk in their diets. I have been told if they have ice cream they get diarrhea. And your right about finding out if they have thyroid problems like we do.

I'm adding a link that I haven't added to my blogg yet. It tells the truth about SOY being poison.

Open Original Shared Link

TinkerbellSwt -- thank you for the posting about that doc I'm going to print it out and read it.

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Read labels and hold the food manufactuers responsible.

I got into a huge fight today with Millstone coffee company for not disclosing their ARTIFICALLY FLAVORED Raspberry 'N' Cream coffee. The guy told me I had to get a letter from my doctor to get their trade secrets. I told him why should I have to pay my doc $200 for an office visit then another $200 for him to write a letter requesting that information, all for a $1.00 pacake of coffee?

I feel it has soy or gluten in it for sure...

That's okay -- I'm going to write to the FDA and report to them my experience...

Millstone Coffee CO

Procter & Gamble Pla, Cincinnati, OH 45202

(513) 983-1100

[Guest Robbin]

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Read labels and hold the food manufactuers responsible.

I got into a huge fight today with Millstone coffee company for not disclosing their ARTIFICALLY FLAVORED Raspberry 'N' Cream coffee. The guy told me I had to get a letter from my doctor to get their trade secrets. I told him why should I have to pay my doc $200 for an office visit then another $200 for him to write a letter requesting that information, all for a $1.00 pacake of coffee?

I feel it has soy or gluten in it for sure...

That's okay -- I'm going to write to the FDA and report to them my experience...

Millstone Coffee CO

Procter & Gamble Pla, Cincinnati, OH 45202

(513) 983-1100

OMg, I cannot believe they get away with that! I thought that the labeling laws prevented things like that. I am certainly going to write as well. I know I have been glutened by products that claim to be gluten-free and this is craziness.

Mary, Ursula is right on target regarding potassium levels--I had severe heart palps and ended up in the emergency room from the dizziness --was a potassium problem caused from D. Also, Lipitor is sooo bad for your liver. If you can, I would avoid it, my mom had elevated liver enzymes from it. I would try the watermelon and cut back on carbs to see if it helps. I lowered my cholesterol by actually adding more "good fats" like nuts and olive oil. Take care

[Ursa Major]

Ms. Sillyak, it is a myth that Asians eat a lot of soy products. They ONLY eat fermented soy (fermenting eliminates the poisons in soy), and only in fairly small amounts, as a condiment. The soy industry permeates that myth about Japanese being healthier because they eat a lot of soy, but it's a lie, to get us to buy their garbage. And a lot of soy producers believe it, too! I know some soy farmers, and they think it's a great product. They are as brainwashed as everybody else.

[Fiddle-Faddle]

Is Tofu fermented? And soy millk? I have a Chinese friend (born in China) who makes her own soy milk from dried soybeans. She makes a lot of soy-based foods, all Chinese.

I'm especially interested in the Asian aspect, as my husband is of Japanese ancestry (he's third generation Japanese-American). He grew up eating Japanese dinners every night, and, as I like to eat and cook Asian food anyway, I've tried to continue that (especially now that I'm de-glutening).

BUT--for as long as I've known him, he's eaten a big bowl of cereal every night before he goes to bed--and then has diarrhea in the morning. He also loves his bread and pasta...

I've been making gluten-free garlic-and-cheddar biscuits, and buying gluten-free pastas and cereals, but then he goes and buys whatever he wants. Grrrr! I can't win!!!

[Ursa Major]

I believe tofu is fermented, but soy milk is simply made from waste from making other things and made to taste nice. It's terrible for anybody.

[loraleena]

Asians do eat a lot of soy, but in small quantities and not processed (ie- not added to cereals, vitamins and the like. That is hydrolyzed soy and it is very bad for you. Asians have the highest risk of thyroid cancer. Try not to eat soy (only organic more than 2x week if you have thyroid issues.

[ms-sillyak-screwed]

I won't consure SOY if you paid me a million dollars. It is the casue of my thyoid problems.

[Guest Robbin]

Ok, this is soooo scary to me as my oldest child drank soy baby formula for his first two years of life since he was allergic to everything else and I was not able to nurse him. He has had so many health problems and the poor kid is only 20....I feel like a horrible mom. Strangely enough, my youngest child is allergic to Soy! We are a weird family.