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Gemini

Member Since 25 Aug 2006
Offline Last Active Yesterday, 11:38 AM
*****

#922374 Vitiligo

Posted by Gemini on 02 July 2014 - 01:45 PM

I was thinking something along these lines but didn't say anything. My husband has vitiligo, which he's only had a few years. He also has type 1 diabetes which has been for 20ish years now. I think (working on diagnosis) that he also either has celiac or crohn's. (God... let it be celiac, far less scary!) I've noticed when he gets bad "flares" with his intestinal problems he also develops more "spots." So while it isn't specifically linked to a lot of things, I have no doubt that when his AI system gets all wonky that it's what is making him splotchy too.

 

I have a fun set of diseases myself, AI and otherwise. And while one isn't linked to any specific AI disease, it is common acceptance that it is far more common among people with one or more AI diseases no matter what they are. I know that some links are specifically established, and that's great. But I don't think it is fair to discount that AI diseases in general tend to be linked and cluster, regardless of what they are.

Yup...I agree, Addy!  The key is to tame down the immune response and diet is always a good, first start. I think any one with any AI disease should be tested for Celiac.....simple little blood test!  If that comes back negative and the immune problems are ramping up, I would just do a dietary trial for awhile. Can't hurt to eat gluten free

for awhile.


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#922360 How Come Gluten Didnt Bother Me In Italy

Posted by Gemini on 02 July 2014 - 12:06 PM

I am so happy to find someone who did exactly as I did.   I went to Italy with a gluten intolerance problem but; just like you I said to myself …. how can you go to Italy and not eat bread, pasta, pizza, biscottie … etc.  So I ate them all and did not suffer from any side effects of gluten for almost 3 weeks.   I too came to the same conclusion that it must be the  GMOs.   As you see from your post most people think we are full of ……….. go figure; I know my body and I know when I have been poisoned. After 3 days back in the States and 3 lunches with organic wheat bread I am suffering all the side affects.  

GMO's have nothing to do with Celiac Disease or how we react to wheat. If that were true, then no one in Europe with Celiac Disease would be reacting to wheat that they eat. That is about as silly a reasoning as it gets.

 

I would find it pretty easy to travel abroad and not touch anything that was off limits to me as a full blown Celiac. I have done it on many trips.  I take this disease very seriously and would be in the hospital on my vacation if I were as careless and.....well......stupid as someone who apparently cheats all the time on their diet.  You come onto a Celiac forum and tell us you routinely eat wheat foods?  If you are actually a diagnosed Celiac, good luck with that. I mean, you certainly have free will and the right to eat whatever you want in life but to those who are new to this lifestyle and really need to be strict with your diet, don't make this mistake and think you can eat the wheat in Italy because you can't.

You will still be ruining your gut and it might ruin your vacation.


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#922275 Newly Diagnosed With Questions!

Posted by Gemini on 01 July 2014 - 12:45 PM

What IrishHeart and GottaSki said!  They are veterans of this diet, as am I, and I am also like you....quite the puker when I sustain a gluten hit or eat food that I just cannot digest. Thank goodness I rarely, if ever, get glutened now....and I eat out occasionally at trusted restaurants that have never made me sick.

 

First off, no need to eliminate soy or dairy......unless you have in your face symptoms like bloating/gas/etc. after eating them.  Not everyone has to stay away from them and it is not advisable to cut out too many foods when first diagnosed (from a whole foods perspective).  I did not become symptomatic for a dairy problem until 2 years after diagnosis.

I still cannot tolerate too much dairy at one time so eat dairy lite but I was diagnosed at 46 years old so there's a difference between you and I.......age.  ;)

 

You may want to try digestive enzymes to aid in digestion because it is very common for Celiac's to have impaired pancreatic function and without that, you cannot digest food well in the beginning and guess what?  You puke.  Lamb is the one meat I can not eat anymore.  It is a fattier meat and I just cannot digest it.  It comes up pretty much the same way it went down so I never touch the stuff.  Sorry for the graphics but I wanted to stress that throwing up can be common for a Celiac and it may have nothing to do with a gluten hit.  Fattier foods are tougher to digest in the beginning so keep that in mind.  Explanation: when your villi become damaged, they can no longer send signals to your pancreas to release the enzymes needed for digestion.  That's how it works.  Once you heal some, then your gut starts to work again, messages get sent and in time, this problem should go away. Just make sure your supplements are gluten free or you can ask your doctor to test you for pancreatic insufficiency.  I never did that but it was obvious what the problem was.  I used the enzymes and felt much better after meals.  I rarely use/need them anymore.

 

Yes, eating out should not happen for a couple of months but once you learn how to inquire about and ask to have your food prepared safely, it is not a high risk endeavour as some like to think.  It all depends on where you go and learning the correct way to have food prepared.....all the gotcha's of safe food prep.  We can help you with that when the time comes.

 

Do not despair, buy some digestive enzymes because I think you clearly need a little boost with digestion or your food would not be coming back up.  If it's looks like it is not broken down much, you need digestive enzymes.  I used Enzymedica Digest Gold but any one that is gluten free will do.

Make sure it contains enzymes to break down fats, carbs and proteins, as opposed to ones that target specific food groups only. Also, a good probiotic would help also to populate your GI tract with healthy bacteria.  These are the 2 supplements I always recommend because they help

get you over the hump towards healing.

 

Hang in there!  :)

 

 


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#921720 How Do You Work With This?

Posted by Gemini on 26 June 2014 - 06:45 PM

Bummer! My heart really goes out to you that you are in the middle of a reaction. 

There are plenty of people here on the celiac forum that take risks that I wouldn't dream of taking, so don't trust that what works for others who have celiac will work for you. For now, I'd categorize yourself as super-sensitive and make decisions accordingly. Though it may seem impossible to avoid cross contamination or accidental glutenings, it can be done. You just end up making a lot of your food from scratch and getting super selective about which brands and products within brands are safe. For instance most Glutino products are made in dedicated facilities, but their crackers are made in a shared facility, so don't even try them. Paying attention to discussions here on the forum is a great way to learn tidbits like that without having to go through the reactions yourself.
You do have to be more selective about what risks you choose to take and forego temptations the rest of the time. For you, it looks as if your day to try new foods is going to be Fridays only. But every time you take a risk, you have to ask yourself if possibly having to give up a weekend is really worth it. 99% of the time, it won't be.
On a positive note, I can tell you that after I managed to stay 100% gluten free for several months without any accidental exposures, my reaction to trace amounts did seem to die down quite a bit. (But the one time I accidentally ate a full dose of gluten, my reaction was different and worse than anything I had experienced before going gluten-free.)
If it makes you feel better, I was still making mistakes on a regular basis up until the fifth or sixth month, despite the fact that I work from home and have a gluten-free kitchen. I might also recommend setting aside specific time for grocery shopping, and not taking the kids with you so that you can focus and not make any mistakes when shopping.
And in your case, I think being a single parent is a good thing because you can make your home a gluten free zone rather than have to share space with another adult who may not be as careful as you need to be.

The OP is not super sensitive so let's use some common sense. She is 6 months into the diet and still has a way to go with healing so the necessary thing to do is cook all your own food for awhile because otherwise, you will slip up and make yourself sick. That is normal for everyone and has nothing to do with sensitivity. At 6 months, there should not be continued hits and it will slow down healing. As boring as it sounds, no eating out and especially no risks like ice cream or any fast food. In fact, giving up fast food completely forever will cut out one of the biggest sources of being glutened.

Glutino products are safe. They are a solid brand. I am very sensitive to tiny amounts of gluten and have tried many of their products, including crackers, with no problems. I have never heard anyone complain about them. Let's not diss a reputable company.

To the OP......maybe you have an issue with dairy? That is common with us (me included) and can give symptoms identical to a gluten hit. I still cannot eat ice cream or gelato unless I stop after a couple of bites.
That's my limit!
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#921531 Anyone Ever Been Glutened By Ground Beef?

Posted by Gemini on 25 June 2014 - 07:27 AM

I've only been here a short time, but two ideologies seem to be prevalent around here. One ideology trusts in empirical, well-researched, current medical thinking. The other takes a more skeptical view of standard medicine and may give more credence to to anecdotal experience (both theirs, and that of others) and to alternative medicine.

 

I think that in some cases the second group (into which I fall, BTW) may be a bit more skeptical because we have been burned in the past by traditional medicine. Many of the health improvements I've experienced haven't come as a result of traditional medicine, but as a result of anecdotal help I've received from talking to others, searching the web, etc. I realize that this makes me laughable to some, but I've received enough help from listening to others' experiences that I don't care.

 

When it comes to things like this thread, these two ideologies can wind up clashing. Those who trust labels, etc., trust. And those who don't, don't. All of us are dealing with things the best we can. What I wish is that both groups would one another a little slack. Trying to navigate all this is hard enough already.

 

I realize I'm generalizing here. Please don't be offended if my categories don't quite fit your situation.

I don't think learning to read a label correctly has anything to do with trust issues.  There really is a learning curve with Label Reading 101 and if industry continually screwed it up and had allergens in a food source that was undisclosed, people would be getting sick all the time (and it isn't all about Celiac, either) and that is not happening.  Truth is, I am sure it can and does happen but not on the epic scale some people think.  There are so many other reasons why people with food allergies and intolerances react to food and it may or may not have anything to do with their individual problem. Most of the mistakes or questions I see here lately are either from learning that still needs to happen or

learning from the wrong sources.  The ones that perpetuate urban myths about where gluten is.  Because it is there in some places and not hidden because it would have to be declared.

 

CC is a whole 'nother issue and that's why every food store I have ever been to in my area has disclaimers now about allergy issues and cc. Right up front where it's easy to see. It's up to you, as the consumer, to have a look and see if there is any chance of something cc'ing the food you want, in the case where it sits. Ask questions.

 

I am not against labeling laws but I also have never had trouble figuring out what was safe for me to eat in any situation.  When in doubt, eat something else. If newer labeling makes things easier, fine, but you still are going to have to learn about this diet and use your head to figure things out. I have been doing this for a very long time and it does become second nature and should get tremendously easier. And if the unthinkable happens and you sustain a hit, lesson learned and move on. It won't happen nearly as often the longer you do this.


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#920761 Tell Me About Your Corn Sensitivity.

Posted by Gemini on 18 June 2014 - 07:02 PM

I have to agree with the 3 of the smartest ladies on this forum.......corn is hard to digest and contains a lot of sugar, which can be problematic to a healing gut. That is most likely the reason for some of the problems experienced by some here. And to make it clear to anyone reading this thread......the corn crop is not cross contaminated with gluten. Not one reliable celiac organization has ever come out with that one and I'm sure if it were a problem for us, it would be mentioned in numerous publications. Let's not go off in the weeds any further than this forum has been headed lately because this kind of information is not helping anyone!
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#919906 My Doctor Doesn't Know Anything About Celiac Disease...do I Even Have It?/

Posted by Gemini on 11 June 2014 - 12:41 PM

Thanks Gemini...I want to hug you.  I'm breathing and relaxing.

 

I'm really bothered that the Dr refused to check my antibodies.  It's been 5 months.  He said there was no reason to...ever.  I've been looking at Dr's...what will my insurance cover, etc.

 

My faith in Dr's is really shaken and it was years ago.  I've had medical issues for so long...so many.  When I was in my 20's I was having repeated numbness on my left side...specifically my arm and leg.  Months and months of this.  Pain, fear, etc.  My GP at the time just didn't want to deal with it.  She told me at one point that I probably had MS or a brain tumor.  Finally she schedules an MRI and what I had was a bleeding lesion on the brain that was causing seizures.  This led to brain surgery.  I left her practice after that.  It just seems like Dr's are fine if you have strep or need medicine...but if something is really wrong...they just don't know.

...and if I were next to you, I would hug you back and give you a cookie!  :D

 

You said it in a nutshell....your doctor doesn't know squat about Celiac and that is far too common, I am afraid.  I was sick for 30 years and ended up down to 94 wobbly pounds and wasting away before I figured it out and requested the blood panel. I had symptoms out the whazoo and every single one of them disappeared over the next 3 years gluten free. As they say, hindsight is 20/20. I still have a lot of trouble trusting doctors and am very cautious about what I let them do or don't do. Yes, that is my problem but when you have been screwed over and nearly died from their mistakes, it shakes you to the core. I understand your feelings totally.

 

I am so sorry you had to endure what you did and then ended up having brain surgery.  Reading all you have written about yourself, I would say you are a screaming Celiac, like the rest of us here.  And yes....it can cause brain lesions, that is well documented. I have always said that unless it can be seen on an x-ray, good luck having many doctors find it.  The doctor gems are the ones who will ask why you are seemingly falling apart with so many problems and look at you as whole body and not treat each organ/body problem separately.

 

Get yourself a new doctor and let us know how it all goes. We are on the same team here and really do care. Do not eat gluten...they can still look at your gut to make sure everything is healing well.


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#919902 My Doctor Doesn't Know Anything About Celiac Disease...do I Even Have It?/

Posted by Gemini on 11 June 2014 - 12:27 PM

Really? From what I understood from my (admittedly limited research) and from speaking to several gastroenterologists and dieticians, the biopsy is still the gold standard. The blood results can have false positives, as well negative results when in fact the patient has Coeliac disease. Also aren't there numerous other conditions that can cause the same markers in the blood as celiac disease? There are also certain blood test for celiac disease that aren't recommended becasue they give unreliable results if you have an IgA defficiancy.

 

Admittedly, if you get positive blood work and going gluten free helps, then chances are you have celiac disease, but saying "you do not need a biopsy for diagnostic purposes" is a bit of a dangerous statement isn't?

Any time you ask a GI doctor, they are going to respond that you need a biopsy for diagnosis.  I think part of it is liability driven and the other part money.  In some circumstances, a person might need to move on to a biopsy if their blood work was inconclusive and came back as a weak positive and then the biopsy can be used as a back up diagnosis, if you are lucky enough that they hit the right spot and find damage.  I believe even a weak positive is indicative of Celiac but as you can see from reading this forum, some folks need more proof to convince them they have it and to stick to a strict gluten-free diet.  I can understand that if they aren't that familiar with the disease or the diagnosis criteria.  It is not always as clear cut as other diseases.

 

As far as I know, there are no other diseases that will elevate blood markers except the tTg. That can be elevated from other autoimmune diseases which are commonly seen with Celiac.  However, the DGP and EMA will only be positive from Celiac Disease. 

 

All of the IgA related testing in a Celiac panel will not be useful if a person has an IgA deficiency.  They could have the IgG related tests done but may choose to have the biopsy if these are elevated because the EMA test is IgA based and that is usually the clincher in a blood panel for Celiac Disease.

 

http://www.curecelia...-ema-blood-test

 

Taking all this into account, I stand behind my sytatement that for many people, a biopsy is not required for diagnosis.  Even Dr. Fasano, one of the leading researchers and Celiac physicians, has stated the same.  Celiac testing is not a one size, fits all kind of thing.  The bottom line for me is that if someone shows clear cut benefits from eating gluten free and regains their health, I stand behind them 100%. That is far better than having a negative biopsy and not going gluten free and becoming sicker and sicker.

I know relatives who had this happen and I am watching them suffer all because they believe a doctor unquestioningly.


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#919743 Safe Wines For Super- Sensitive People?

Posted by Gemini on 10 June 2014 - 11:49 AM

 

Here is a link to an article that talks about why vintners don't list ingredients. And grapes are often a crop that is doused heavily in pesticides and herbicides so if you react, it might even be to a residue of something toxic left on the grapes themselves

How about buying a good quality wine and drink it and stop worrying about what may or may not be lurking in it, courtesy of all those evil wine makers out to get us?  :blink:

 

 

 

                                                                                                                                                                                                             -LTES-


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#919740 Marsh 1

Posted by Gemini on 10 June 2014 - 11:19 AM

Thanks for your post Peter. I suspect this is celiac disease too. A friend was diagnosed in her 50s and her villi will never fully recover. I don't want that to happen to me and am taking this very seriously. I also suspect my dad and my son have it too. My dad is now in a nursing home with dementia and we are awaiting the blood results for my 4 yr old son (whose eczema is starting to look like dermatitis herpetiformis.)

In reality, a person does not have to have 100% functioning,healed villi to be healthy.  There is overlap in the small intestine of areas that absorb different nutrients, meaning that if there is damage to one area that absorbs iron, there are other areas that absorb iron also. Is it optimal that you have the whole thing working well?  Sure...but it isn't necessary for health.  I was diagnosed in my mid 40's, after a whole lifetime of symptoms and I have healed well and am healthy now, with no deficiencies.

 

For the record, I would consider you a bonified Celiac.  Marsh 1 is the first stage of damage from Celiac. Having elevated lymphocytes is another big, red flag.......even though the medical profession usually won't give their blessing until you reach almost maximum damage   It's about as silly a logic as one can have.  No other disease state requires you to become that sick before they call it what it is.  Do they wait until a diabetic is in a coma before they acknowledge they have diabetes?  A big, fat no to that one!  You were lucky to catch the damage early before you go any further with it and I would stay on a strict gluten-free diet for life and stay healthy.  The anemia will go away once you do that.


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#919583 Disability

Posted by Gemini on 09 June 2014 - 11:54 AM

I am applying for SSI disability. 

 

I am not sure about your story but I have been sick my whole life, I am 37 now.  I have osteoarthritis in my spine, Grave's disease, severe weight loss >160 pounds and still dropping ( I weigh 150), I had chronic migraines ( 3-4 a week but haven't had any now in the last two months), severe vitamin deficiencies, and the list goes on.

 

I am just starting my process with the state and not sure if I need my doctor involved in the initial process or if I get him involved if I am turned down and need an appeal. I didn't have a job when I was diagnosed so therefore I didn't have the short term disability available to me. I have my complete medical history for them if they are interested in 1000 page books lol.  I can't imagine I would get turned.

You know, Beth, many of your symptoms from Celiac will abate and go away with time on the diet.  Many of us were at death's door and made a complete recovery, after many years of suffering. It is possible that you will recover well enough that you can work eventually.  It sounds like you need short term disability as opposed to SSI disability. Does SSI offer short term?  I do not know much about disability insurance because I recovered and work full time now, so never needed it.

 

It is not easy getting SSI and it should be that way because there are just too many people who abuse the system.  You know how it works......the ones who need it don't get it and the ones who should not qualify seem to find a way to do so. It can be a very unfair system, like many things. But Celiac Disease and it's related health problems rarely are permanent enough that you can't recover and be well.  I hope you have this outcome!


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#916804 This Is Just Beautiful!

Posted by Gemini on 20 May 2014 - 01:15 PM

Why is it that people go to these phenomenal restaurants and then have a cow when there is no bread?  REALLY?  You can get bread anywhere and I never, even before diagnosis, thought the bread basket important.  In fact, I never ate much from it because it wasted precious gut space that could be saved for the real food I went there for.

 

I just thought the demise of the bread basket funny and a real boon for us......no more flying crumbs that end up in MY gluten-free meal!  ^_^


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#916795 Who Needs A Dexa Scan?

Posted by Gemini on 20 May 2014 - 12:27 PM

The doctor just told me that DEXA scan may not be covered for every celiac.  She seemed unimpressed to hear a doctor told me my bone mass was nill when I was 25 years old.  I had 30+ years of celiac.  I will call my insurance and find out, but anyone know of general guidelines? 

Maybe they are unsure of what is covered now that our health system is being tampered with?  I have had 3 of these things myself and never had problem with coverage.  I think if you have an underlying condition that can damage your bone density, coverage is different than for those with normal bone density.  You have to ask your insurer....good luck!


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#916645 Gluten-Free Rice

Posted by Gemini on 19 May 2014 - 10:41 AM

As far as I know, duck is gluten free, depending on how they are served up!  ;)


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#916627 Gluten-Free Rice

Posted by Gemini on 19 May 2014 - 09:14 AM

For anyone doubting Lundberg's quality control and growing/harvesting/storage procedures, refer to their Farming Practices page and their Food Safety page, which I have provided links to.  If this isn't good enough, then I suggest sticking to a diet of fruits, veggies and protein because this is about as good as it gets!  :)

 

http://www.lundberg..../Practices.aspx

 

http://www.lundberg....afety_Tour.aspx


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