mslee
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ooo!
is hard apple cider legal???
probably not...but the one I like contains:
fermented apple juice,apple concentrate, malic acid,sulfite
thanks!
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thank you pele & ali
When I first went gluten free came here, researched, & learned so much the theories behind the paleo diet & SCD made so much sense!
As primates it makes perfect sense that a diet based heavily on grains would not be necessary or even healthy for us. That grains became a mainstream part of the human diet as a filler to satisfy our mass reproduction.
I can tell I was low in B12 not only from the blood work, the improvement from supplementation, but in the amount of meat I crave. I was vegetarian for 10 years when I was younger but it got to the point my body "told" me it needed meat. It's funny I strongly crave all those other foods you listed that have B's....I eat lots of greens at least once a day every day!
I guess the problem is I took my Mainstream Doctors advice (against my better judgment) & saw a Mainstream Dietitian (Head dietitian of the local hospital by the way) so I ended up with mainstream info...which celiac & lupus are not really understood by mainstream medicine...so there ya go.
Just wanted to get some input from people actually going through this.
I can tell I feel better not eating grains then eating them, it would have been easier just to stick with it...now I'm gonna miss my rice & buckwheat
Ali, I quit most sugar long ago...although have slacked a little lately...it wont be too hard to cut out again. 100% juice & honey are ok right?
I will make sure I have resources when I finally jump in...think getting out of the moldy house is a good idea first.
thanks again!
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Can I jump in again and ask some more questions???
please
So I have held off on doing SCD/GAPS because my dietitian insists I need grains for the health of my brain...she says there are nutrients I would be denied if I cut out all grains. Even being grain light she suggests a B complex & folic acid + the high amounts of B12 I have been taking. But the B complex makes me feels sick.
Do you guys take supplements to make up for what you are missing out in grains???
So I thought I would give her way a shot & see how it went...well I have had a constant headache, constant yeast problem & crave grains ...so have reduced the amounts of veggies I was eating and replaced them with rice or buckwheat.
Another reason I have held off is that my house has a mold problem, we are moving in May...I thought trying to rid myself of yeast/mold through diet may be a waste of time & effort if my home is infested with mold.
The other question is after a year of SCD do you bring grains back into your diet? & just try to gauge if they are creating a yeast problem then cut back from there????
as of now the only grains I eat are basmati rice (lower glycemc index than other rice, my blood sugar spikes) & this pocono buckwheat cereal...I really do like (guess buckwheat is out on the scd diet???). She wants me to try quinoa, I have it but have not tried it yet.
thank you for any input you may have!
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I've been gone, but I love key west! glad you got to go!
I was not gluten free when I went, but would like to recommend Blue Haven, they were very accommodating for our party. Many restaurants on the island have reals chefs who use fresh, real food without all the additives artificial ing. most places use & they are very friendly people down there.
Open Original Shared Link
a little more info about florida/key west
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Well I had my Endocrinologist apt this morning, I think shes a good one...seems to be on top of things. Although I realize these issues may take more than one Dr visit to figure out.
She was concerned about my thyroid, so is running labs & I will be getting a sono x ray of my thyroid too. & go back to review in 2 weeks.
As for the hypo/hyper glycemia/ diabetes issues she thinks at this point I should focus on my diet by eating a very low carb very high protein diet...because that would be treatment regardless of testing. For me I feel better when I don't eat, it's after I have consumed carbs/sugar that I feel dizzy and sick. So this is a start, give it a try and go from there.
Lots of good info in t his thread! I will look into books and other web sites to get more info on blood sugar and the glycemic index.
Thanks so much everyone! Without this web site I would know nothing about my thyroid or past labs...info posted here has helped me understand so much more...and make progress in my treatment.
thanks!!!
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Well had to bump my Rheumy apt to the first week of April, but have PLENTY of questions for him when I see him. I'm excited because he seems like he will be a good Dr. in an area where they are doing lots of Lupus research.
So will post what he says...
Also Mother of Jibril,
Lupus pregnancies are usually high risk, and can cause flairs in women...meaning it makes symptoms worse. Although there are some cases where women feel better during the pregnancy. Lupus is confusing! I'm coming to terms with not having kids because I know my little body can't handle it. And my heart & mind can't handle a miscarriage. But thats just my choice, may adopt down the road.
Good Luck!
Hope all work out for you!
~ali
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Hi All!
Looking for the nice girl I met from Portland...when she was visiting her family in Austin last Fall...
We met at a Family Friends Thanksgiving Dinner...you were the first Celiac I have met in person.
Any was it was nice meeting you, I have lost your contact info.
My name is Alison my Aunt is good friends with Betsy & Earl
contact me if you like.
~ali
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Hi All!
Looking for the nice girl I met from Portland...when she was visiting her family in Austin last Fall...
We met at a Family Friends Thanksgiving Dinner...you were the first Celiac I have met in person.
Any was it was nice meeting you, I have lost your contact info. (sorry!)
My name is Alison my Aunt is good friends with Betsy & Earl
contact me if you like.
~ali
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Just be careful..to get back on my carrageenan kick here..lot's of toothepaste contain this too. That's why sadly I quit using Tom's Of Maine.
If you are still having digestive issues..check to see if your toothpaste..and/or other products contain this product.
I seem to be sensitive to carrageenan, I have been using Tom's not knowing what was gluten free...
What brand do you use that is gluten-free, soy free & Carrageenan free???
Thanks!
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thanks so much for the update & your efforts!
good job, taking action & being proactive
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Hi
Just wanted to say that I've found going gluten free, dairy ,MSG & processed food free has helped SO much. But I still have some anxiety that is hard to deal with, I have just started taking sub lingual B12, & also got one shot of B12, Magnesium every few days (it can cause "D") Hope these will help with time.
In the past I took St Johns Wart I remember it helping me feel better. Mint or chamomile tea helps, Kava Kava, and ah other medicinal herbs..hint hint may be other options...use caution if you are allergic to many plants.
Now I take a small dose of amitripyline 25 mg before bed, to help with pain and sleep seems to help with anxiety too. Although I hate to take chemical meds. for now I need it.
Good luck!
I hope you feel better soon!
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Have you thought of doing the B12 jabs as a person with Pernicious Anaemia would ? With neuro involvement the standard procedure is jabs alternate days for 2 weeks OR until nerve improvement stops to improve then 2 monthly there after. Sometimes I wonder if the blood tests just are not accurate enough. If the sublinguals show a high serum level but it is not getting into the cells. I take 5000mcg a day but still need a jab once a month as well. And it took me two years of injections - most nearly weekly - to get to this stage.
Good luck with your Dr! Make sure that FREE T3 and FREE T4 are tested as well as TSH and Antibodies.
Since it's been about a month since the shot, and I am occasionally feeling some tingling again I would guess shots might not be a bad idea. For now she (my internist) said no more shots for 3-6 months when she tests me again.
Since I feel dramatically better I must be absorbing some...so will give this some time if more shots are needed down the road I'm open to it.
Will be moving out of state within the next 6 mo-1 year...so new docs down the road anyways
taking notes for what to bring to the endo. thanks for the input!
will post an update after my apt next week
have a good one!
~ali
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Too late to help Carbo, but I wanted to put in a good word for a few places I enjoyed while visiting family back home in SD....
1) YES! Ranchos in OB was super good, went there twice wait staff was very knowledgeable & helpful. It is more Healthy/CA Mex but has a huge menu & everything my we had was great!
2) The Kensington Grill Open Original Shared Link
Has a great Happy Hour, I was unsure of what to get asked our waitress she recommended an seared ahi salad that was delicious! ...but wait it gets better! ...she came back & told me the chef has Celiac & he made my dish special making sure it was safe. A little pricey for dinner but wonderful food & nice atmosphere. Good deals for happy hour.
3) El Zarape in University Heights/South Park Speaking Spanish may be helpful here, but I was told the seafood tacos are cooked with only garlic salt & pepper & served on a corn tortilla. That seems like what I got, & it was very good did not have a reaction. Very small hole in the wall place in a neat part of town. Very good quick healthier MX food.
Open Original Shared Link
4) Burger Lounge in La Jolla, Open Original Shared Link
Yeah they have burgers, and I got one without a bun...but they use grass fed free range beef without fillers in their burgers. They didn't seem real knowledgeable about gluten free, but it was a small family run place & the manager was happy to make me a safe burger they also have salads & fries that I guessed were not safe because they also serve fried chicken tenders & onion rings.
Enjoy!
They seem alot more Celiac friendly there than where I live these days...miss the good food!
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also wanted to add that testing for other autoimmune issues is alot like testing for celiac because...people can go years without a dx, some dr are skeptical or non believers, symptoms do overlap, you can go in circles for years and not get very far...all that fun stuff!
Best of luck to you!
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Hi again
Georgie:
"One shot only ? Refresh me .... how low was your B12 originally, and what type of shot did you have - and was it into muscle or sub subcutaenous into the skin ?"
before any supplements, 2 months after my celiac dx my Vitamin B12/Folate, Serum Panel Vitamin B12 was 551...with 200-1100 listed as normal. My methylmalonic acid serum was slightly high at 361, normal listed as 87-318.
at that point my internist told me I could take 500 mcg B12 daily, my tingling, numbness symptoms got worse and worse...so recently I went in had her test for Pernicious Anemia they gave me one shot in the upper arm muscle. And upped my daily sups to 1000-2000 mcg daily. My labs taken before the shot came back as b12 926, normal listed as 200-1100 & methylmalonic acid serum 298 normal listed as 87-318.
Symptoms of tingling were gone. Until the past week or so I have had a tiny bit. But NOTHING like before.
~also have made an apt with an endocrinologist to test my thyroid & blood sugar issues~
I will request extended oral GTT, and Insulin measured
Thank You so much for all the help!!!
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Hi Guys
I know I have talked to some of you a little about these autoimmune conditions. I have a couple & suspect a couple more...
In 2001 they said I have lupus, I saw several Rhuematologists and that was the consensus. They also always said "ah, your thyroid is a little off" but never treated it.
symptoms progressed, no meds helped
Summer 2008 my blood work showed autoimmune hep, which lead to my celiac dx.
My GI says the celiac caused my lupus & other autoimmune issues and going gluten free should heal them all...
in the mean time my old Rheumy dropped me due to insurance issues, so I have not discussed any of this with a Rheumy. I have an apt with a new one in March. I can't wait to hear what he has to say!
also next week seeing my first endocrinologist for my thyroid & some blood sugar issues.
So I say yes go though with your Rheumy apt. they can run blood work for other autoimmune conditions. And knowing that autoimmune runs in your family it is probably something you may want to check on every year or two.
Keep in mind not all docs are good docs, not all docs are up to date, some are critics....autoimmune conditions are mysterious to most dr.s your lucky to find a good one. Don't get discouraged if the first does not work out.
good luck!!!
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Hello Everyone!
Thank You so much for all the helpful info & resources!
Georgie I don't know what to do about the B12 but my symptoms did get better after the shot.
I have been moving a little slow lately but am trying to focus on always consuming a protein with my carbs or fruit. Seems to help. But still want testing, waiting to hear back form my dietitian. Will try to make an endocrinologist apt this week.
I know they will probably be resistant, I too am trying to gain weight not loose. I am small & don't fit the profile, but my Great Grandpa who died from type 1 complications was very thin too.
Always wondered how people with diabetes found out, do they just recommend checking if you are heavy or have a poor diet?
Never thought my diet was that bad, but looking back now I realize it may have been. Because I don't gain weight I always used that as an excuse for it to be ok to eat a little junk.
Will keep you guys posted
Thank You so much! This is a huge help!
have a good one!
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Hi There
I'm sorry your down, been a little blue myself lately.
Please keep in mind the test are commonly wrong. Do you guys know how accurate the genetic tests are?
Open Original Shared Link can be ordered through your doctor, and Open Original Shared Link can be ordered online.
I just wanted to say if you can give this more time, give it a chance. When I removed gluten all kinds of other allergies & intolerances popped up, soy was huge...I think it's just as painful as gluten for me. Also when a person is celiac their digestive systems cannot produce the enzymes needed to digest dairy...so it could be either or (gluten or dairy) or both for you.
Sadly the only way to know is to be patient & stick with it. I'm in month 7, month 4 I was going nuts because I reacted to everything. I'm getting it figured out & starting to feel better but I know I've still need some time to heal.
good luck!
hang in there!
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I have really been enjoying ciders! never thought I would but have found some favorites to be:
Ace apple (tart apple cider flavor) or pear (light & pear-y), or Strongbow (dry & crisp.) And although Wyders is good their website states although the cider is gluten free they cannot guarantee there will be no cross contamination within the factory so I don't buy that one anymore.
Will have to try Greens, I tried some sorghum beer...couldn't get more than one gulp down.
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I don't know if there is any other link besides that both are autoimmune. I believe I read they think there could be a link between G.B and Lupus...which is also autoimmune. I have recently learned that with one autoimmune condition there are usually others. My Dr thinks the celiac made my immune system go crazy and start attacking all systems...and that treating the celiac will allow my body to heal.
Don't panic or worry but it may be something to keep an eye on.
autoimmune conditions: Open Original Shared Link (info link)
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Sounds a bit like Reactive HypoGlycemia. Some say its an early warning sign for diabetes BUT you may be able to still turn it around / slow it down if you eat right now.
I was tested with a FIVE hour oral Glucose Tolerance Test. The blood draws were done every half hour and hour for Glucose AND Insulin. Then the results were graphed. I was dx as my BS dropped so fast at 2 hours and at 3 hours was UNDER my fasting level to begin with. A normal
Diabetes two hour oral GTT would not have shown this.
Now I have the dx I just keep a check with fasting tests every 6 months - glucose AND Insulin.
We produce too much insulin in response to a sugar stimulus. That makes the Blood Sugar drop too fast and we feel giddy / weak etc. Remember simple carbs are sugar and gluten-free carbs seem about the worst.
When you get like this your body screams for a quick fix ( sugar again) when you need protein/ fat instead. If you eat right for a few days / weeks then the Insulin stops overworking and the pancreas slows down and you don't get the highs and lows as much.
Good books I have read are Reactive HypoGlycemia for Dummies, and The Insulin Resistance Diet.
The size of the meals has to be small mini meals. Too much can trigger the Insulin. And they need to be balanced and have more protein and fat.. Sugar is to be avoided as well as caffeine and artificial sweeteners. Fruit is bad. Yoghurt maybe bad etc
Since being gluten-free - I have been eating more carbs and I have been feeling really HypoG again - so have been strict and eating eggs and cheese whenever I feel like a snack. Do that - and ALWAYS carry safe food with you and you should feel better soon. The Dr to see is an Endocrinologist.
This is an example of the RH graphs. Open Original Shared Link
Hi Georgie!
You & Shay helped me figure out my B12 issue!
(~a little update on that....
I had my Internist test my B12 & methylalonic acid ....M.A. was a little high, B12/folate serum panel a little low (551). started on 500 mcg sublingual B12 daily
Months later still had lots of tingling,numbness, dropping things all getting worse....requested testing for pernicious anemia
she tested me then gave me a B12 shot & said I could up my sublingual to 1000-2000 mcg a day. Symptoms went away.
Labs came back methylalonic normalized & B12 normal @ 926
She says I don not have Pernicious anemia, but we will re check in 3-6 months, no shots until retested.
~One Question do you know..... are a B12/folate serum panel & a Vitamin B12 test exactly the same or different?)
NOW about the glycemia...
"lightbulb"
Looks like there are several types hypo & hyper etc...
I really think this might be what I'm dealing with, I now know it's my body not handling sugar well. Caffeine I have never been able to consume either. The small meals of high protein are always safe meals that make me feel better....my dietitian made note of that.
I will look into testing, not many good endocrinologists listed in my area but will see, my thyroid needs help too...may be looking into an alternative type Dr anyways to take care of what traditional medicine has ignored.
For now at least I know to avoid sugar, I h ave been munching on almonds all day, avoided my usual juice & fruit & chocolate. Had a protein lunch.
Thank You soooo much for all the info & support!!!
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If you think that you may have diabetes/hypoglycemia then you should insist on getting tested. I did recently after bringing it up for many years and being dismissed. I wanted to put an end to the worry and guessing and know for sure. I don't fit the profile(but I do have several risk factors-gestational diabetes and celiac disease) but my new doc. humored me and was suprized. I wasn't. There are a few ways that it is done but I had the 3 hr. where they have you drink liquid sugar and draw blood prior to drinking(fasting), 30 min. 1 hr. 2 hrs. and 3 hrs. I am terribly afraid of medical stuff and have a lifelong history of passing out, especially with blood draws, since I was a child but I was upfront with the nurse and she was glad and let me lay down, which helps, and was wonderfully supportive. If I can do it, anyone can!
Regardless of type it sounds like you have a big risk factor.
DON"T try to go it at your own and put yourself on an adjusted diet without getting tested. Been there done that for a while until I could get the courage up to get tested. It didn't accomplish anything for me. It is worth it to get a diagnosis. A doctor can give you help and tools/resources and will know what other things to check/watch out for. If your having problems and not monitoring it properly, you're just continuing to put yourself at risk.
Thank You!
That makes me feel a little better, the docs just keep telling me they don't know why I get so dizzy. I will have testing done, does not sound pleasant but best to find out for sure.
I did find out my Great Grandpa had Type1 Diabetes
thanks for your input!
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Sigh is right.
I think you may have your answer when you say she works for a major hospital, her training would have been completely conventional BUT given that she is at least willing to talk about hypoglycemia she may be willing to be an ally and you may be able to educate her. I say that only if you need her ongoing support and if you have the energy for it.
Some years ago after breaking my jaw and my leg which required a hospital stay I was offered pureed liver, beets and potatoes, it was a pink gray sludge that provoked a hunger strike on my part.
I met the dietitian who was anxious to help but all that she could offer me was Ensure with bananas blended into it, a slight improvement but barely. It is extraordinary to me how powerful diet really is and how little we respect that in our society but given the dollars made by supplying medicines to fix what happens when we don't respect our diets maybe not a surprise.
I am falling in love with food again. I realize now how many years I have spent afraid of eating and I intend to make up for it.
I highly recommend the two books by Jodi Bager and Jenny Lass, the Grain Free Gourmet cookbooks. Last night I made an Apple Galette which was totally yummy.ew liver, beets, & boost!
I know I was really torn my Doc told me to see the dietitians at the hospital...& I thought I should seek out my own...but thought maybe the Hospital Dietitian would have some experience with severe celiac. She didn't have alot, but seems open.
I will give it a little more time, she noticed I do better consuming protein & avoiding carbs & sugars & maybe I can get her help to get a dx for this dizziness issue.
Sounds like if I do SCD I need to be prepared anyways... will give it a little more time but stay carb/sugar light.
It is crazy it's starting to look as though all my health problems have roots in my diet, the gluten & now sugar & carbs. I would much rather eat this way than take pills the rest of my life!
Thanks will look into the cook books!
I met the dietitian who was anxious to help but all that she could offer me was Ensure with bananas blended into it, a slight improvement but barely. 
Testing For Other Autoimmune Disorders
in Related Issues & Disorders
Posted
I know in San Diego there is a big Celiac research group...here is a link for more info Open Original Shared Link
So I saw my new Rheumatologist & the news is not so good. Yes Gemini he said the celiac is just one of several autoimmune disorders I have. Being gluten free will help the celiac....I wish that GI had never said that "oh it will heal everything" false hope & all. Now they want me on heavy duty meds & I'm pretty scared.
I have "very clearly" SLE Lupus with a very high ANA, Celiac, Hashimoto's, Raynaud's, Autoimmune Hep. & as a result of all these fibromyalgia.
He wants me to start a low dose of the chemo drug methotrexate to get my immune system under control. I am debating this, I can try a med I have tried in the past agin, try to do it all naturally, or try the chemo drug...those are my choices.
Most with lupus don't have to use that drug, so I don't want to scare anyone...it's just that the other meds don't work on me & I keep getting worse.
Anyone else have updates??? Would love to hear from you guys, curious how many with Celiac also have Lupus or other more serious autoimmune conditions. & How you are doing.
thanks,
~ali