Jump to content

   arrowShare this page:

   Get email alerts  Subscribe to FREE Celiac.com email alerts

Ads by Google:
Celiac.com Sponsor:                                    


Member Since 25 Aug 2006
Offline Last Active Yesterday, 12:46 PM

#916044 Always Feel Like I'm Having A Reaction

Posted by Gemini on 14 May 2014 - 01:01 PM

This is not a matter of not understanding nutrition, but knowing that much of the population is suffering from vitamin deficiencies, whether they are gluten-free or not. Being gluten-free simply means that you lack access to the most commonly fortified food - wheat flour - and many gluten-free flours are not fortified at all. I'm fully aware that wheat, barley, and rye don't contain any vital nutrients that can't be found elsewhere, but I am also aware that there is a reason wheat has been fortified for more than 50 years despite that there aren't any regulations requiring it.

Edit: The 2002 study out of Sweden that found vitamin deficiencies in people who had been gluten free for 8-12 years. 


I would tend to disagree that much of the population suffers from vitamin deficiencies. That is alarmist stuff. Those with malabsorption issues would have to worry about it but if they learn about nutrition and where to get the vitamins and minerals needed, plus address their malabsorption problem, it should rectify itself.  If you eat a balanced diet and take appropriate supplements, most people should be good to go.  It really is all about learning how to eat.  Many people today have no clue what's in the food they eat and tend to gravitate towards low quality carbs. I am sure there are people who are vitamin deficient but I doubt its "much of the population". That is like saying most people should not eat gluten.  I don't buy into the idea that everyone has a problem with gluten, either.

  • 1

#916038 I'm Sure You Get Asked All The Time, But...lab Results

Posted by Gemini on 14 May 2014 - 12:34 PM

Ummmmmmmm......you have Celiac Disease and I want to welcome you to the club!  :)


Your tTg/IgA is way, way elevated and that correlates to intestinal damage.  Not to worry......mine was around 200 and I healed very well.


The EMA test (Endomysial) is positive and that test is very specific to Celiac, meaning only Celiac can cause a positive result.  It is a little odd that your total IgA was only 96 as your tTg is quite high.  I had a total count of over 700 on that when I was diagnosed but you cannot ignore the other 2 tests which are the biggies for celiac blood work.


Did they run a DGP?  That test is the one which tests for the reaction to gluten in the blood.  A positive on that means you are ingesting gluten and are reacting to it and it's the test that should be repeated at least once a year to make sure you are not ingesting any after you begin the diet for awhile.  It can take a year or more for your blood work to return to normal, if you follow the diet correctly.  Are you very symptomatic?


At this point, you can either just follow the diet or opt to have a biopsy but the biopsy is not needed for a diagnosis, with these results.  It is a matter of personal choice.  Congratulations on getting a diagnosis....now you can get your health back!  :)

  • 1

#915832 Always Feel Like I'm Having A Reaction

Posted by Gemini on 12 May 2014 - 11:25 AM

I'd get tested for vitamin deficiencies if you haven't already as they can cause you to feel really awful and can actually cause many of the problems you've described. To make matters worse, the deficiencies you may have had before going gluten-free from malabsorption would be different than those you get after, when you're skipping the fortified wheat or fortified milk products. Because supplements have their own problems, I would definitely get tested first (easy blood test) and only supplement those you need. 

But if you're getting glutened that frequently, you're probably taking risks that you shouldn't. Is it time to do more research into hidden sources of contamination, keep a food diary to narrow in on culprits (gluten or perhaps some other intolerance), or to stop eating out entirely? 

I can say that after I managed to stay 100% gluten-free for several months, my reactions to even minor contaminations eased up quite a bit. I can still tell you if a food, even those being sold as gluten-free, contains gluten within a few hours of eating it, but the reaction is a minor annoyance rather than the major inconvenience that it was in the first few months. So perhaps there is something in your routine that isn't as gluten-free as you thought it was that is keeping your autoimmune reaction amped up to full throttle.

No one should be having additional nutritional deficiencies after diagnosis, if you are eating a healthy diet.  You do not need fortified bread or milk to live well and be healthy.

I eat very little dairy because I am still sensitive to it after 9 years gluten-free and I have no deficiencies and am healthy.  Ditto for bread. There are some great choices out there for nutritionally sound, gluten-free bread so , as long as you aren't eating the white stuff, you should be fine.  I think it all boils down to lack of knowledge of nutrition, not from the inabiltiy to eat all that fortified crap.......and most of it is crap. 


To the OP.....you sound like you have additional food allergies or intolerances.  If you are being that careful with your diet, then it's probably not contamination....which everyone seems to always think it is.  Gluten does not lurk everywhere. And bananas cannot be confused with gluten by your body.....that cross reactive stuff is nonsense.  No valid scientific merit to it at all.  Bloating can be caused by parasites or H. Pylori....have you been tested for those conditions?


Keep it simple and plain and keep track of what you eat and the reaction you get.  That may help you to figure out what the problem is.  After 4 years gluten free, you should definitely feel better than this.  But if you have other food sensitivities/intolerances, that will keep you from feeling well.  I hope you feel better soon!

  • 1

#915678 How Do You Emotionally Deal With Setbacks?

Posted by Gemini on 10 May 2014 - 12:24 PM

This wasn't directed at me but nonetheless I found it great to read, thank you for writing it.

You're entirely welcome! It's always a pleasure to know I may have helped put someone in a better frame of mind. Life will always have it's challenges and the key is to find a way to deal with them and make them comfortable. It's the best way to fight back and win!
  • 1

#915357 How Do You Emotionally Deal With Setbacks?

Posted by Gemini on 07 May 2014 - 09:06 AM

Hi Gemini...Thank you for sharing your wisdom. I haven't felt any sensitivity to dairy...which I'm glad about. Which other foods did you have trouble with.

You've been gluten free for 9 years! Wow...how long after starting until you felt good on a regular basis? Do you still have blips? Is that just an inevitable part of the disease?

Thank you again!

I did very well on the gluten-free diet and then at the 2 year mark, that's when the dairy problem became evident.  I did not figure this out sooner because my gut was totally trashed at diagnosis so I probably didn't notice the fact that dairy was becoming a problem until I had healed a bit.  That's a fairly common thing to happen to us.  So...after 9 years, I am dairy lite.  I can tolerate small amounts but it is also cumulative with me.  No drinking milk (which I do not like anyway), no ice cream or puddings....things like that.  Don't even miss ice cream because who wants to live in the bathroom every time you eat some?  The cramping from it is pretty bad.  I still heven't gotten diary totally back so at this point, I have given up and am fine with that.  I would rather feel good.


I steadily felt better, with no major set backs in the beginning, because I ate a mainly whole foods diet with some bread and a few goodies thrown in because I was 20 pounds underweight when diagnosed.  I really needed to plump up.  But it was 3 years in total before the very last symptom disappeared.  My gut felt good but I had this leg pain in my right femur bone that was so bad, I was limping.  Had x-rays and there was no arthritis at all.  No one could explain it.  So, I did what I always do and just soldiered on until one day I woke up and reliazed my leg was not hurting anymore.  I think it might have been some neuro thing or vitamin deficiency that finally resolved because it has never returned.


I have to say that I rarely have blips at all anymore.  I am very careful, take no unnecessary chances when dining out and do that infrequently anyway.  It is a treat when we go out.  I hate getting glutened because I am one of those who erupt like a volcano.  :unsure:   The whole GI tract explodes and I get sick as a dog for about 1-2 days.  I am back to normal by day 4 but it wipes me out so I try to avoid it like the plague.  I really hate being sick.  But steadily, over time, I have gained 20 pounds and work out in the gym to develop those muscles that never had the chance to develop.  I actually have osteoporosis in my spine and osteopenia in my hip from Celiac, so that is the reason I weight train.


It is hard to believe it in the beginning of your Celiac life that you really can gain your health back and be comfortable and feel well but it does require time.  Of course, I do have other autoimmune problems from going so long without a diagnosis but I manage them well and do not take much medication. I am a firm believer in eating healthy, not cheating, exercise and don't forget to laugh often.  I do not let the medical world control or have too much input in what I do because I don't always believe they do the right things.  They tend to scare people. Yeah, so what, I have 4 AI diseases. I will never let that stop me or slow me down and just think positive. Even my doctor admits I am doing well and do a good job of managing things and really, with some education, anyone can achieve the same. Learn all you can, over time,so mistakes can be minimized.  It is not inevitable that you will feel badly more often than you feel good with Celiac.  Maybe in the beginning while you heal but not down the road.  Plus, after being gluten-free for so long, I am totally comfortable with this life and do not pine about foods I cannot eat. It is second nature to me and I would never go back.  You will feel this way too, I promise.  Go forward, not backward. If you are missing something food-wise, let us know because usually there is a good gluten-free version that someone will know about.  And, lastly, drink more tea.....I find that tea is so settling to the stomach.  The British have that right!  :)

  • 1

#915267 How Do You Emotionally Deal With Setbacks?

Posted by Gemini on 06 May 2014 - 11:29 AM

I'm wondering how everyone else deals emotionally with setbacks you encounter during your recovery?


I've been doing so well for over a month...yay!  I was diagnosed in January, had a rough beginning.  But for a little over a month was doing great.  I would talk about how good I was feeling, how I hadn't even realized how bad it had been until I saw all of the improvements,  I felt like I really got the label reading, cooking, etc. down.  I was exercising again.


And then last Wednesday I started feeling bad again.  By Thursday I was doing the run to the bathroom up to 15 times a day...exhausted...foggy...headache. All of the usual stuff.  I analyzed everything that I had eaten and realized that I had added 2 things into my eating that I hadn't had....almond flour and Ghiradelli chocolate chips.  I bought the chips because a recipe called for bittersweet and I didn't see any from Nestle.  Looking into it I see that they are made in a shared facility.  So, I guess I got too confident, didn't check something out and am suffering for it.  :(


I am having a really difficult time with this emotionally.  I feel mad and sad and all of that stuff.  The setbacks in this journey of celiac disease are so harsh and devastating.  They take such a toll.


How do you deal with it?  Get through it?



I highly doubt that there was any gluten in the chocolate chips.  Ghirardelli does an excellent job during manufacturing and I eat these same ones every time I make cookies and have never gotten sick once in 9 years gluten-free.  I am an extremely sensitive celiac also.  You have not been gluten-free for very long at all......and these chocolate chips are very rich so maybe your system just couldn't handle it right now.  You will find that you may have reactions in the beginning for awhile with foods that are on the rich side and do not contain gluten.  I consider Ghirardelli one of the safest companies out there for gluten free chocolate.  Plus, shared facility is different than shared lines.


I hope you feel better but do not sweat this at all.  It is not a setback, just a little blip in the big scheme of things.  You will continue to heal but have to accept that once in a while, something will not agree with you and it will take more than 4 months to feel tons better.  This is what we all go through and it will get better.  Now go and have another cuppa tea!  :)

  • 1

#913805 Severity Of Symptoms Linked To Genetic Profile?

Posted by Gemini on 24 April 2014 - 11:19 AM

3 COPIES?!?!?!?  Holy Moly!!!!!!!  :o


Too bad our "luck" at Celiac genetics couldn't be transferred to the lottery..... :lol:

  • 1

#913644 Waiting On Daughters Biopsy Results, And Have A Question.

Posted by Gemini on 23 April 2014 - 12:02 PM

Sure, for monitoring if in fact she has Celiac (pretty likely) it would definitely be good. However, I just meant for purpose of diagnosis they are not necessary if the tTG is positive. 

Actually, it is really important, as GottaSki mentioned, to have the complete Celiac panel done. tTg can be elevated with Hashi's alone.  Ttg is not useful for dietary compliance if diagnosed with Celiac....the DGP is.  It would be really worthwhile to have original numbers before a gluten-free diet is started.


mom2J......I would bet a week's pay your daughter has Celiac.  I thought it odd that a doctor would give "permission" for you to start a gluten-free diet.  No one needs permission to start a diet that could be lifesaving.  Between her symptoms, which are definitely NOT "non-specific" and her difficulty in gaining weight, she sounds like a Celiac to me.  I never had the cramping and diarrhea until the week I was diagnosed and I was 46 years old when that happened.  I most likely triggered for Celiac as a toddler, when I look back at symptoms and some tooth problems I had that would have had to have happened when my teeth were forming.......very, very young.  Many people do not experience the diarrhea yet doctors get hung up on that.


A few things......low WBC is common for those with autoimmune disease.  Mine have been low my entire adult life and I have Celiac, Hashi's, Reynaud's and Sjogren's Syndrome.  They are a little higher lately but I have been strictly gluten-free for 9 years now.  The only time it is cause for worry is if your daughter is getting sick all the time.

But you need to wait until she is gluten-free for awhile because just having undiagnosed Celiac can make you sick all the time.


You will have to watch for signs of hyper-thyroid once she is on the gluten-free diet for a bit.  Once your gut starts to heal and absorb nutrients again, the thyroid dose she is taking now may end up being too much.  That happened to me and I went seriously hyper after being gluten-free for 4 years. Remember, I was a lot older at diagnosis so it took longer for me to heal than it will most likely take for a 12 year old.  I have lowered my dose of thyroid meds by 20 mcg....which doesn't sound like much but it is.  I was diagnosed with Hashi's 20 years before the Celiac.


It may take a bit longer for her tTg-Iga to come down to normal because both Celiac and Hashi's will raise it.  Don't become alarmed as this is quite normal.


You do know that if it is Celiac, then the whole family needs to be tested!  Good luck and don't worry.......the answers to her health issues are being discovered.  The gluten-free diet is not hard, once mastered, and there are many options available now that were not there just 10 years ago.  She will be fine! 

  • 1

#912865 Shaving Help? Looking For Disposable Razors Or Electric Alternatives

Posted by Gemini on 16 April 2014 - 03:13 PM

No one was asking you to defend your diagnosis so no need to be defensive.  From the type of information you posted, it wasn't clear whether you had a DH diagnosis or not.

I'm sure you are well read but it appears some of your information was not from reputable sources and is incorrect.  That needed to be addressed for the same reason we do over and over again....the newly diagnosed need to learn correct and current information on Celiac or DH, not information gleaned from unreputable sources that are not true.


As for the question of the molecule and permeability, the composition has nothing to do with whether or not gluten passes through your skin and makes you sick. It doesn't and that is not new science.  Many of us do not screen all of our make-up, only the stuff that counts like lip stick and hand cream.  If gluten passed through the skin into our gut, then none of us would heal.


As for your other allergies, maybe just stick to a plain razor?  I know you can still buy them without the strips or look at mens razors....they tend to make them very uncomplicated for guys or they won't buy them.

  • 1

#912852 Shaving Help? Looking For Disposable Razors Or Electric Alternatives

Posted by Gemini on 16 April 2014 - 01:15 PM

As Dr. Petersen is a Chiropractor and Founder of the HealthNow Medical Center, and she has not provided any research for her claims,  I do not consider this a reputable source of information.



Colleen is correct and I am always in wonder at those who would choose to believe the word of a chiropractor for Celiac Disease related topics over respected experts in the field of Celiac Disease.  I am not knocking chiropractic because I have a phenomenal chiropractor who has done brilliant things with healing muscle and joint injuries I have had but I would not ask him anything gut related.  That article you posted was filled with many false claims but I would expect that from Dr. Petersen.  Her information is false and totally unreliable.


If you want to learn how Celiac Disease actually works, I encourage you to read: Celiac Disease: The Hidden Epidemic by Dr. Peter Green, a noted expert/researcher in the field of Celiac Disease.  Excellent book!  It also teaches you how the GI system actually works, which is really crucial to managing Celiac well.


BTW....you missed my question on whether you have been diagnosed with DH?  If not, then you don't know whether it is DH or is from an allergic reaction.

  • 1

#912823 Shaving Help? Looking For Disposable Razors Or Electric Alternatives

Posted by Gemini on 16 April 2014 - 10:46 AM

jennifer........I read your post on the SS section of the forum and have to make a few comments about what was posted there.  It also could apply here.


Were you officially diagnosed with DH?  Did you have a skin biopsy? Because...and yes, I am going to make this point.....DH is not caused in any way by touching something which contains gluten.  You do have to ingest gluten for a DH outbreak to occur, without any shadow of a doubt.  However, I am not implying that your rash problem is in your head or anything else but it sounds like you have a wheat allergy, on top of Celiac.There is no gluten allergy, it's either barley or wheat and it would definitely cause the kind of outbreak you describe. It sounds like a contact allergy, which can also occur along with Celiac.


Usually people with contact allergies have extremely sensitive skin so many other products may bother you also.  To my knowledge, there is no gluten in the shaving strips but they can be irritating because they are also scented...which I hate myself.


I am also extremely sensitive and am a diagnosed celiac.  I do not label myself as an SS because I do not believe that term has much meaning.  Everyone with celiac will sustain damage from gluten ingestion but some feel it more strongly than others.  I, too, have gotten sick from shared lines but there are some companies that do it right and I have no problems with them. But I follow a very strict diet  or I become violently ill so I know where you are coming from.


DH takes a very long time to go away, once you are gluten free.  But if you don't have a biopsy to confirm, then you don't know whether it's DH or not.  There are many other rashes that are common to Celiac Disease and some are caused by allergy, not Celiac.  Some of the comments made by your allergist were not correct.  Skin does not become leaky, as in Leaky Gut.  Sorry, but people reading your posts are getting incorrect information.  I am glad you are better because that is always the desired end result but if you have very sensitive skin, many products may bother you and it will end up being through trial and error that you find stuff that works for you.  The electric razor may work well but many people find they can be irritating as well.  I would look at Consumer Reports for information on women's razors because they give good reviews and will list razors specifically made for women.  There are many out there.



  • 3

#912029 Teeth Cleaning At Dentist's

Posted by Gemini on 09 April 2014 - 03:31 PM

Hi Mimsy,

Welcome to the forum.  I am also very sensitive and seem to react to things which some other celiacs say I couldn't possibly react to.  This made my initial recovery very difficult while I sorted this all out.  In this forum, they seem to like to make sure that the vast majority of celiacs who don't have problems like these are not alarmed by statements made by people like us.  Although this is the super sensitive section, many, myself included, just hit the New Content button and don't realize which section of the forum that they are in.  It helps if you say that you are super sensitive.  It also helps to say that you think that you had a reaction that seemed like a gluten reaction, because, of course, we can't know for certain that a reaction is to gluten, especially when something is considered gluten free by the vast majority of celiacs.  Personally, I find it useful to read the experiences of people like you.  Thank you for posting.

Why would it help anyone to say they are "super sensitive" when the situations that the poster described as causing a gluten reaction could not possibly cause a gluten reaction because gluten was not ingested?  The post does, however, prove useful for many as it shows what does not cause a reaction and what not to be concerned with.  We all know newbies should be concerned about touching doors, avoiding "flour" in gloves and those risky library books....... :wacko:


Honestly?  This forum needs to become re-focused on common sense and known facts about Celiac Disease and how to live successfully with it, not dwelling on Celiac myths that never seem to die. Most Celiacs become more and more sensitive as they progress on the diet but most learn to live well with it and do not worry about the things that are mentioned in this post and the ever popular notion that there is gluten in wine.  So let's re-focus, people, and stop confusing things further.  Sensitivity does not matter here.....all Celiacs need to be vigilant regarding ingestion of gluten so it won't cause intestinal damage. If anyone needs to learn further than what can be offered here, many of the experts on the forum can recommend excellent books by reputable doctors and nutritionists who will teach you the correct way to live gluten free....without fear.  Key words here....without fear. 



  • 1

#911613 Gluten Free Charlatans

Posted by Gemini on 07 April 2014 - 07:36 AM

For all those looking for answers to their health issues who think it may be gluten related, please look at this website for the complete listing on who not to trust with your health!  Read all about the brand new medical specialty Certified Gluten Practitioner!  How exciting!  I mean, isn't that what we do on Celiac.com.....for free??????????


Dr. Tom has taken the BS artist to a whole new level.............. <_<




Sorry about that......it's Monday, OK?  ^_^



  • 2

#910975 Pediatric Tsh Values

Posted by Gemini on 31 March 2014 - 06:07 PM

How you explained it is how I understood it but everyone is saying his numbers are fine so I don't know that I can get a pediatric endo to see him :( He has all the symptoms you listed EXCEPT he isn't gaining weight at all. At almost 6 his is only 39 lbs.

If your son has undiagnosed celiac, then even if his thyroid is low he may not gain any weight. I have Celiac and Hashi's.
I was diagnosed with Hashi's many years before the celiac and I weighed 94 pounds at diagnosis for Celiac.
I am still thin, although is now have some meat on my bones but gaining weight is still not easy for me. People are always surprised when I tell them I am hypothyroid because they always assume you gain weight with that. Not if you have Celiac........
  • 1

#910920 Exocrine Pancreatic Insufficiency

Posted by Gemini on 31 March 2014 - 09:51 AM

You are very thorough in your research, positive thinking!  :)


I usually read anatomy related books that explain the function of organs to find the information I am looking for.  When it became obvious that I was not absorbing fats, I looked into the possible causes and from what I have read, your pancreas may become atrophied because your small intestine can no longer send out the signals for enzymes, due to destruction of the villi. The pancreas is not being used so tissue atrophies, the same as what happens to muscle tissue.  Most of the time, you get that back when your small intestine heals on the gluten-free diet.  Sort of like lactose intolerance. I do not think there is destruction of the pancreas from Celiac but a malfunction.  Type 1 diabetes usually occurs because the autoimmune system attacks the Islets of Langerhans directly and this is where insulin is produced.


I still have trouble sometimes, depending on what I am eating, so use digestive enzymes when needed.....which isn't nearly as often as when I was healing but I still need it for a heaftier, fattier meal.  I was never tested for pancreatic insufficiency but sometimes, when the sympotoms are in your face, and the enzymes work well, you don't need to.


Off to read some of this information......thanks for posting this!

  • 1