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Gemini

Member Since 25 Aug 2006
Offline Last Active Dec 18 2014 11:32 AM
*****

#775035 Does Super Sensitivity Exist?

Posted by Gemini on 21 February 2012 - 08:55 AM

This argument about super-sensitivity exists IMO largely because other celiacs are afraid of it. What is more frightening than realizing that it's within the realm of possibility to react to the loaf of GFCO certified gluten-free bread in your refrigerator that you thought was safe? Or that there are people with celiac disease who cannot consider eating out... ever? It's much easier to tell the person who is threatening your entire, carefully-constructed, gluten-free world that they must be reacting to fat.

I think it's reasonable to remind people that super-sensitivity seems less common than reactions to other foods and food chemicals, and to remember to consider ALL the ingredients in what they ate. I think it's a jerk move to tell someone they are obsessing. Aren't we questioned enough by family, friends, and doctors?


Afraid of super sensitivity? How is that different than coming very close to death from this disease? That is real fear of which I and many others I have met faced. When I reacted to labeled gluten-free foods, I didn't automatically assume that it was from gluten. There are other ingredients in most gluten-free processed foods. It is always the smart route to investigate all possible sources of a reaction.

As far as being easier to tell a person they may be reacting to fat, maybe it is easier because it's extremely common for Celiacs to have trouble digesting fats, even after recovery. It's called pancreatic insufficiency and it's not a subject heavily discussed. Instead, people become overly focused on one thing...gluten contamination. There are many reasons people react to foods, which should remain the focus when someone becomes symptomatic, which you have been good enough to state in your post.

With regards to obsessing....to be perfectly honest, it happens. I don't regard it as a jerk move to state the obvious.
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#774465 Hematology Visit

Posted by Gemini on 18 February 2012 - 09:13 PM

Hi all, thanks in advance.

To start off, I am a 25 year old Caucasian male.

My current health issues are Celiac Disease (diagnosed Nov 2009 by biopsy/anti-ttg positive blood tests), Addison's Disease (diagnosed in May 2011 by low cortisol and high ACTH), secondary hypogonadism (diagnosed by low free testosterone and low pituitary hormones LH/FSH).

Throughout the last couple years, my RBC/HB/HCT have been flip flopping from mildly low to borderline low. RBC range has been 3.5-4.5, HB range has been 119-141, HCT range has been 34-41. Basically it just seems to jump back and forth, never going higher than the bottom of normal. My absolute retic count throughout this time has ranged from severely low to mildly low. It is usually between 1-15 when normal is >25. It seems like every other test my levels bounce back and forth. Lately I've noticed my WBC starting to slide lower. It has always been between 5-7 and recently it has dropped into the 3's. I had been referred to a hematologist due to my bouncing counts and low b12/ferritin/folate.

Here is the blood work ran by the hematology department last week, it was taken one month after I was treated with B12 shots bi-weekly and oral ferritin/folate. I had a B12 shot 5 days before this test was taken. My B12 before treatment was 72 and my ferritin was 19. I have highlighted low results with red and borderline with orange.

The hematologist seems to be blowing me off, but my Gastro/Endo both believe it is something that needs to be investigated. My gasto mentioned a bone marrow biopsy, but the hematologist said not a chance. I am just worried as my health has not been good over the last couple years. Any advice or past experiences are appreciated. I understand nobody here is a doctor and others have much more severe issues, but I didn't know where else to ask. Thanks again to everyone!!

WBC: 3.1 (4-11)
ABS Neutro: 1.77 (2.0-6.5)
ABS Lymph: 0.79 (1.0 - 3.2)

ABS Mono: 0.32 (0.2 - 0.8)
ABS Eosin: 0.2 (0.04-0.40)
ABS Baso: 0.03 (0.00-0.10)

RBC: 4.1 (4.5-5.7)
HGB: 127 (140-170)
HCT: 36 (40-49)

MCV: 88 (82-97)
MCH: 31 (27-32)
MCHC: 352 (320-360)
RDW: 12.3 (11-15)
MPV: 8.3 (7-11)

PLT: 156 (150-400)


B12: 183 (110-800)
Homocysteine: 14.2 (3-15)
RBC Folate: 491 (normal >650)

Ferritin: 26 (30-280)
Total IRON: 11 (10-32)
TIBC: 50 (43-73)
Saturation %: 22 (20-50)


ESR: 1 (0-15)
CRP: <0.2 (0.0-5.0)

ALP: 41 (35-125)
AST: 30 (7-40)
ALT: 31 (10-45)
GGT: 9 (8-80)




Low white cell counts are common with people that have multiple autoimmune issues, which it looks like you have. I also have low white cell counts, which commonly dip into the mid 2's but I am rarely sick so do not worry about it. It is also common to have lower RBC's. I have found that even healed Celiacs have less than robust counts, including myself.

Havin Addison's Disease can influence you thyroid gland...they all work together in a feed back loop. If your thyroid gland is hypo, or low, that can cause anemia. Have you ever had your thyroid tested?

If you are getting sick a lot, then that would be reason to investigate further. Generally, doctors don't become concerned with low counts unless you are constantly sick. Has your health improved by going gluten-free?
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#773665 So Delicious Coconut Milk

Posted by Gemini on 15 February 2012 - 09:08 AM

Can you please provide references for those NUMEROUS studies? I am only aware of this one:
http://www.ajcn.org/...pe2=tf_ipsecsha

This is what the FDA analysis said about it: (link provided above for FDA study)
"Also, it appears possible that the most sensitive celiac
patients were not considered for analysis in this latter study, because those with any
initial small intestine mucosal abnormalities after a one month pre-challenge strict GFD
period (n=4 subjects), and a few subjects that experienced acute clinical symptoms in
response to the gluten challenge, were excluded from consideration."
Pg 28 of 93.

Or, was your comment about the numerous studies an opinion rather than a fact?


Considering that most of what you say on this forum is personal opinion and not fact with regards to the issue of super sensitivity, why is this important to you now?

By the way, I have no desire to scare people who can eat normal gluten free food.
My husband, diagnosed with celiac disease, eats that food without any issues.

But, when celiacs/gluten intolerants are having issues eating that food, they need to be made aware of the possibility that it could be a problem.

I was in that boat myself. I was unaware of that possibility for many months until my GI doctor suggested it.

Had someone on this forum suggested to me that I might be reacting to normal gluten free food, I could have improved my health many months sooner.


Please provide proof, Stephanie, that your reactions to certified gluten free foods were from gluten. You haven't provided any proof because there is none. There are many reasons why you may react to something other than gluten but you persist in saying it ain't so. That's really scientific....
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#773654 So Delicious Coconut Milk

Posted by Gemini on 15 February 2012 - 08:26 AM

As usual, when certain people post to this forum, the conversation inevitably becomes downright anal and combative. There very well could be millions of Celiacs out there who are not MD diagnosed but self diagnosed and doing wonderfully on the gluten-free diet. They are not on the radar. From all I have seen and read since being diagnosed 7 years ago, there are way more Celiacs doing well on this diet than those who are not. Those who are not most likely have additional food intolerances and allergies or one of the many bowel diseases that can go along with Celiac. Or they may have emotional issues with food that affect their gut. It does happen. What I haven't seen is any proof that there is such a thing as a super sensitive Celiac. I know people whose systems were so inflamed and out of whack due to food allergies that they become super sensitive to just about anything they eat. That is usually temporary and, as they slowly heal, they can successfully add foods back in.

So Delicious Coconut Milk ice cream is safe. It doesn't contain any gluten. It is high in fat content, but good fat is the same as bad fat when it comes to your intestinal tract. It can act as a laxative and cause cramping. If I eat too much of it, that's exactly what happens. Gluten like reaction minus the gluten. You don't have to be a rocket scientist to figure this out. I am also in research so have that analytical mind but never let that get in the way of common sense. It is entirely possible to over think things to the point of obsession. This is what I see here.

For newbies, it's this simple....if you stick with certified gluten-free products and stay away from shared facilities, unless they have a good track record for keeping things separate and clean, you should be fine. If you do react to a new food, it probably is not going to be from gluten but from one of many other reasons mentioned already. You may have to heal a long while before you get to the point where you can eat without getting sick a couple of times a week. This is normal. Continuing problems should be addressed with a doctor you trust. There may be an underlying problem, common to Celiacs. Above all, relax and don't live in fear of minute amounts of gluten out there, otherwise, you'll end up like some of the posters to this forum....overly obsessive about food and life. :blink:
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#773642 Saw The Nutritionist

Posted by Gemini on 15 February 2012 - 07:33 AM

And you know what else? I'm NOT giving up my coffee!! If I stop for three weeks I may not be able to handle it when I add it back, and I'm not going to take that chance. I LOVE coffee! I thank God, literally, every morning when I take that first sip. Coffee to me is one of the things that makes life worth living. Out of all the things I have ever eaten or drank, coffee is my number one favorite. So I may cut back a little, but I won't go below two cups a day.

Cigs, well that's another story. I've been threatening to quit for a long time and I really do want to. I think after I get used to all of these dietary changes I'll give it another shot. I know I don't have the willpower to do it all at once.


Amen to that about the coffee! :D It's my reason to get up in the morning!

I think you have a handle on things now and are making wise choices. Diet first, then worry about the cigs later. You want to come out of this alive and well so baby steps, baby steps! ;)
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#773330 Saw The Nutritionist

Posted by Gemini on 13 February 2012 - 07:16 PM

Well, that one is malarkey. I get digestive problems the day after I eat nightshades, particularly tomatoes. No joint issues at all.

Did she suggest you just buy clean meat? There is USDA organic meat, you know.

I'm not sure I think much of this nutritionist.


Yeah, I agree with you on this. Following such a diet and giving up coffee and cigs? Your body is going to go into shock! :o I would concentrate on the diet first and cut down on the coffee to 1-2 cups per day.
I woudn't quit smoking just yet....between the coffee and no cigs, you may feel like you're going to die and we don't want that! When things calm down a bit, then you may find it easier, with less aggravation, to go to the next step.

I am sill wondering why anyone who calls themselves a nutrtionist would give wheat grass and barley to a Celiac. :blink: That'll do wonders for your healing! I think a clean diet with organics would get you in the right direction. Remember...you won't heal and get nutrition if you don't eat.

Hope you feel better soon!
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#772745 I Hate Everything

Posted by Gemini on 11 February 2012 - 02:37 PM

here in ireland, nutella has milk in it, and starburst has soya lecithin! argh! but I do buy and eat skittles here sometimes >_>



omg so you guys are just gonna get me stuff? :lol: :lol: :lol: :lol:

all I can think of right now is that I love terra original exotic vegetable chips! you can pop the air out of the bags and roll them up to take up less room, then tape them again (my mama did that once when she mailed me some stuff) and the 123-gluten-free spice cake mix is really good, iirc. aaaaaaaaah isn't it expensive to mail stuff though?! tell you what, if you're getting me a present it's totally up to you how much you want to get, and as long as it's clearly gluten-free, dairy-free, and soya-free... I'm not a huge chocolate person either come to think of it. I do love anything with cinnamon. I don't know... *choice-coma*



If we said we are going to send you a care package, then we will. I will inquire at the post office as to how much it costs to send packages and weight amounts. That's the key....how much it weighs. I have paid $15.00 to have tea sent form England and.......don't laugh.......I paid $40.00 to have a large shipment of cookies sent from Oz. Yeah, I'm crazy. I split the cost with a Celiac from work because he went to Oz on vacation and brought back these amazing cookies that were essentially oreos coated with chocolate ganache.
I justify the expense because I do not dine out that much and this is my treat. I cook all my own food so if I want to pay $40.00 for shipping cookies half way around the world, I'm gonna do it! ;)

The one thing you have to do, Strawberry, is send me your name and address via PM. Don't be nervous....you can trust forum members. I promise I'm not a wacko.

I have a good idea now of what to send. The things you mentioned I can buy easily around here. I will buy things you cannot get in Ireland because those are the comfort foods you are hankering for. But you may want to look at Sainsbury's stuff or find a larger food store near you. That might help. I'll let you know what I find out at the post office but not to worry.....I have a pretty good idea of what it costs to ship stuff so we'll get this done.

BTW....IrishHeart is perfectly normal...she's from Boston! :P
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#772106 Lupus? Connective Tissue Diseases?

Posted by Gemini on 09 February 2012 - 10:14 AM

Hi Suzi,

I've explored this topic quite a bit, because I was referred to a rheumy about six months after going gluten-free. I've been to multiple specialists and had more blood draws than I can believe. I showed up positive for Mixed Connective Tissue Disease based on my blood test results about six months after going gluten-free.

I don't think I have that Autoimmune disease. I'm pretty sure I would have gotten it or Multiple Sclerosis (my first cousin sadly died from it) if I hadn't made the choice to go gluten-free.

I'm not giving medical advice, but I think you have to have the rash to have Lupus. I have 3 close friends with Lupus. Two of them won't go gluten-free, and I respect their decisions. One is not doing well at all. She blames it on living in St. Louis close to the Monsanto plant. Another went gluten-free and raw food. She had the rash and was off the charts with blood tests for Lupus, and she's doing very well now. She pursued getting her masters degree after going gluten-free and raw, and achieved her Master's while working full time. Her bloodwork is within normal limits now too, and she doesn't have the rash.

The third friend refuses to go gluten-free, and she's 30 years younger than the first friend, 10 years younger than the second. She swears she goes into remission when she's pregnant, and she's due to deliver her second baby any time soon.

I respect each friend's decision as to the route they choose to take.

I had a lot of really strange blood tests when I first went gluten-free, and the medical community had me really freaked out by calling me with referrals to different specialists. All of this added to my anxiety level, which doesn't help anything with an autoimmune disease.

What I wish is that I'd given myself a full year for the diet before agreeing to different blood tests and specialist referrals, and to thank my lucky stars that even though the diet is restrictive and some other food issues emerge temporarily, I by goodness am lucky to have figured it out.

So take a deep breath, relax, if your experience is similar to mine you are going to have a few weird blood draws.

By the way, I finally stuck my heels in the dirt and refused to be referred to a pulmonologist when my primary care doctor called me and said I needed to see a pulmonologist because my blood test results showed I had sarcidosis. After researching that, I finally said "Enough!" (I don't have that.)

I don't know if you're as old as me (I'm in my 50's), but it took me quite awhile to work through other food intolerances and to heal.

For me, I had to give up dairy, soy, corn, all processed foods. And I couldn't do certified gluten-free oats for awhile, will never eat quinoa again because it hurt me so bad. I'm feeling better than I have in years now, and I'm enjoying soy, corn, some processed foods, and oats. That was my journey, your's could be different, but please know I wish you the best. :) Good luck!



Marilyn...looks like we had almost the same journey! I am also in my 50's and have been gluten free for almost 7 years now. I completely agree about the wonky blood draws. As a Celiac, you will have wonky blood draws so get used to it. It does not mean you have the disease they are testing you for.

A quick background...I have Celiac, Sjogren's, Raynaud's and Hashi's thyroid disease. My ANA and RF are always elevated but are slowly coming down...
s l o w l y coming down the longer I am gluten free. I have absolutely no symptoms of rheumatoid arthritis either. However, I learned from a very good hematologist that anyone with Celiac or multiple autoimmune conditions will not have normal blood work and she made me relax about the whole thing. My PCP, while a good doctor and decent about most things, buys into the "Oh, you're over 50 with Celiac so we have to get paranoid now about your blood tests"! NOT!

I have repeatedly refused to see a Rheumatologist because I'll be damned if the AMA is going monitor me. Quite frankly, I do a better job because I live in this body and know what's normal for me. They really are quite clueless about autoimmune issues....you have to experience it to understand the mechanism well. So, you have given good advice here. Do not become paranoid. If you have a wonky test but no symptoms of the disease, it's highly unlikely you have it. Other autoimmune conditions can throw off other autoimmune tests, especially the connective tissue diseases. I found out that Sjogrens' will throw off the RF test so that explains it as far as I am concerned. Besides, they are all coming down over time but I never thought it would take 7 years. I am a fast healer but I went a long time with undiagnosed Celiac so it is what it is.
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#772061 Gluten Free Tax Refund Help?

Posted by Gemini on 09 February 2012 - 08:46 AM

I talked to my doc about this yesterday. He said, "Sure I'll give
you a letter for your taxes. No problem. But I gave a celiac patient a letter for her taxes last years and she filed and....later, she was audited."

Bummer.

Wonder if it sends a red flag?

Not sure I am going to bother with it myself. :unsure:


It really isn't worth it in the States to try and deduct gluten-free food as medical expenses. It only adds up if you pay for surgery out of pocket. You can only deduct the difference and it has to be a minimum of 7 1/2% of your total adjusted income. If you buy a LOT of processed foods and have other medical problems where you shell out a lot of money, then you may hit that minimum.

I also do not trust the IRS so would go out of my way to avoid an audit. :ph34r:
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#772045 I Hate Everything

Posted by Gemini on 09 February 2012 - 07:39 AM

I don't have a blender... or want one, for that matter. I am feeling a bit better though. got some potato and leek soup for lunch today and have been snacking on popsicles.

found some rice/millet/buckwheat porridge at a health food store. had to walk a bit far to get there but, hey, i have my porridge now...

keep in mind when you recommend I get things that I live in dublin, ireland, in the city centre, where the selection is pretty crap, and you'd have to visit 12 different stores to see the variety in 1/2 of an american wholefoods


Strawberry...I noticed that also when I was in Dublin last May. I wondered where all the large grocery stores were? :unsure:
There seems to be a bunch of smaller everything and it could be difficult to find gluten-free groceries. I had much better luck eating out but that gets expensive. I am not knocking Ireland as I liked the country very much but it is different than the US.

I am offering you this....if you feel comfortable sending me your name and address, I could do a care package for you and send it. Really. I go to WF once a week and can get you anything you want here. I am in New England so shipping wouldn't be terrible. In fact, I would pay for the supplies if you just pay for shipping. I know the feeling of being in a foreign country and have trouble finding food. I was like that in the beginning of being a Celiac. You didn't know where to find stuff.

I mean it...if you want some cereal or supplies, let me know. I have been very fortunate this year in being able to sell my house and I am having my dream condo built so I feel blessed. I would like to give back so if you want something from WF, let me know. Hope you feel better! :)
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#771902 Raynaud's Syndrome

Posted by Gemini on 08 February 2012 - 03:03 PM

Many years ago when first diagnosed with Raynaud's as a teen, I took meds when I was really symptomatic (Isoptin (Verapamil). For me, the side effects were worse because they caused such a rapid heart rate and flushing. I do have MVP and palpitations so the meds just exacerbated that.
This year, I have been having a really tough time with my feet at night. I bought an electric throw size blanket and cocoon wrap it around my legs and feet when I get in bed at night. I am finally able to sleep again and shed my wool socks and long john bottoms at some point during the night. No more mittens either. The flannel sheets and electric blanket have really made a huge difference.
Interestingly, I have discovered that I have Sjogrens as well. Drs never mentioned it even though I have been treated for dry eye and map-dot-fingerprint dystrophy for 20 yrs. I did swallow tests a few years ago because I so often choke on food or just plain air. Interesting that a diagnosis of celiac disease led me to connect the dots on my other symptoms. Thank goodness for the internet.


I also have both Raynaud's and Sjogren's and diagnosed myself because the docs just missed everything. I went back to them and asked for the blood work for the Sjogren's and it turned out positive. You are correct...thank goodness for the internet but doctors absolutely hate that!

What all of you need are hot flashes. :P I use flannel sheets all the time and love them but could never use an electric blanket. My feet and hands are cold but not bad enough that they bother me...I guess I have gotten used to it. But the hot flashes help a lot...no kidding! Nothing gets the blood going like a good, old fashioned hot flash. It's weird...I am roasting when I have one yet the hands and feet are still cold...not as bad as pre-flash but they never warm up except after exercise at the gym. I just wish it would last!
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#770660 Alcohol...why The Issue Now?

Posted by Gemini on 03 February 2012 - 01:22 PM

Sorry, I get fed up by the American puritanism that often condemns one or two drinks a week. Doctors are infected by it as readily and irrationally as anyone else. Sometimes they lose perspective that restricting something like alcohol 100% can create stress that is even worse for healing than the occasional drink was. We already have stressful diets!

The devastating effects of alcoholism, or even of having two or three drinks rather than one on sensitive stomachs are pretty well known. I doubt we're talking about that much alcohol though.

I don't know what made Lucky97's doctor nervous, but Aly1's doctor just sounds inflexible.


I have to agree with your line of thought, Skylark. It's another area where doctors go overboard. I do think if you are still healing, then maybe alcohol should be avoided. I did not drink at all for most of my adult life because I was a mess from undiagnosed Celiac and it ripped up my gut. However, I have healed really well and have a new found love for red wine. I have a glass every day and my gut feels great. If you make sure you have food with alcohol, it shouldn't be a problem. I never drink on an empty stomach. My doctor, on one of the rare occasions when I went to her, did not like the fact that I have a drink everyday. Tough tooties! It does wonder for the stress of everyday life and there is enough of that going around. Europeans drink a lot more wine than Americans do and they always seem more relaxed than we are. ;)
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#770053 Makeup And Anxiety

Posted by Gemini on 01 February 2012 - 01:24 PM

My take on makeup and personal care products is very simple...if you feel it is causing you problems, by all means replace it. Just one less thing to worry about. I feel it's very difficult to understand the ingredients in those products.

Personally I did not replace my makeup products except to throw out a lot of lipsticks and I'm doing just fine using what I've used for years. I did replace my hand cream as that could easily be ingested.

I did, however, replace a lot of kitchen equipment as some of mine were very old and I felt I couldn't get them clean.


Another good post from Sylvia, the voice of reason! ;)
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#770052 Makeup And Anxiety

Posted by Gemini on 01 February 2012 - 01:22 PM

And one final thing as to the super sensitive issue not being proven: Tell that to my graduate advisor, who's son died in his early twenties from celiac shock. It's really insulting.


Ummmm....just because a person nearly dies from Celiac, does not mean they are super sensitive to gluten. There are plenty of people on this board who nearly died from it, including myself, and they don't go through life labeling themselves as a super sensitive. Everyone with Celiac, all the way down to the gluten sensitive, need to avoid gluten, period. But they don't need to be paranoid about it either. There is a balance with this disease and most people, who learn how this disease process works, do very well with it.
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#770050 Makeup And Anxiety

Posted by Gemini on 01 February 2012 - 01:16 PM

And you need to let both viewpoints be expressed, especially as both are correct. I often fall asleep in my makeup, because I come home exhausted from work. I shower with my makeup.

I can quote MULTIPLE scientific studies where cosmetic companies have to demonstrate how much of their product is absorbed directly into the skin. There was another scientific study published in the British Telegraph demonstrating that up to 5 lbs of chemical products are absorbed absorbed through the skin over the course of the year.

Furthermore, why would cosmetic companies add all kinds of vitamins and nutrients to makeup and lotions, unless they could be ABSORBED THROUGH THE SKIN. Many of those complicated sounding chemicals on the back of the bottle are chemicals designed to enhance absorption rates. SO fine, go ahead and continue absorbing gluten if you really wanna. Ditto tons of lovely sulfates and detergents and phthalates. Floor cleaner is awesome for your hair, doncha know.

But don't, DON'T tell me what helped and what didn't for MY experience. Getting rid of Yellow 5 specifically, in my case, in my hair products, meant literally, and I mean overnight, stopping losing my hair. I mean from one day to the next. It wasn't like, oh look at that it's slowing down and then stopping. It was handfuls one day, and then stopping the next. So I'll take your advice with a grain of salt.



You definitely have an attitude problem, don't ya? I think the subject was gluten, not chemicals, vitamins or minerals. Stay on topic.

I honestly wonder how people get through life, if they fear ingredient listings in shampoo so much. It's pretty easy to figure out what a person is allergic to and many non-Celiacs have problems with certain ingredients also that have zero to do with gluten. You do have to do what works best for each individual, no doubt, but I know I am not absorbing gluten at all because I actually get tested on a regular basis and I have recovered well enough that I do not get as snarky as you do with others on this board. You can restrict yourself as much as you want but it doesn't sound like you've done your homework as far as making comments to those who still use whatever eye shadow that agrees with them, gluten filled or not. You seem to be pushing your belief more harshly than I ever did by saying, quite truthfully, that not everyone has to obsess about eye make-up with regards to gluten. Lipstick and hand cream, yes, but not eye make-up. Not unless you have an allergy.
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