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Always Feel Like I'm Having A Reaction
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16 posts in this topic

Hi there,

 

First post from me. I have been gluten-free for about four years now, I am also lactose intolerant and incredibly carful. But I just can't get it right, to be honest I could burst into tears just thinking about it and typing. I have spent more time feeling unwell than well for all my gluten-free time and the year I spent being diagnosed. I feel heavy, like my stomach is made of lead, I feel constantly bloated to the point that I am uncomfortable to leave the house, I feel so low and I don't know how to be any more compliant. My reactions last around two  weeks and I feel emotional and depressed every time, I exercise a lot and training is really important to me so every time that I feel bloated (my whole body swells and I retain water under my skin everywhere) I just can't cope with it. The doctors don't help, I have been tested for everything and I don't know which way to turn, I just need to feel well!!!! and for my belly to feel normal again!

 

Any help, advise, suggestions greatly appreciated as I want to feel well more than anything,

 

Thank you, Imari

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Have you been diagnosed as having Celiac disease? If not diagnosed formally with celiac disease, were you hoping that a gluten free diet would help and it has not? Or are you having a hard time staying on the gluten free diet?

Please clarify! I would love to try to help you.

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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.

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Thank you both,

 

So I have been tested for vitamin deficiencies and I am taking those that I need. I don't take any risks, occasionally I will try a new gluten-free product and make sure only one thing at a time so that I know whether I get on with it or not, and I eat out on the very rarest of occasions. I have been diagnosed as celiac, and then lactose intolerant since then also. I seem to be very sensitive to things and even things that really should be safe seem to give me belly ache and similar symptoms, like bananas (which I read somewhere recently could fool your body into mistaking banana for gluten?!) and rice cakes also give me stomach ache. I just don't know really. I eat mainly eggs and veg and have recently started eating meat (I thought it may be introducing meat that has caused me problems but I have then tried not eating any again for a while and that hasn't happened) I have also been tested for chrones and similar diseases, I am going to just stick to clean and raw for a while and see how it goes. I just wondered if anyone had experienced similar things and there was something obvious I was missing, but I truly am very careful and just want to feel well.

 

Thanks for you replies and if there is anything you can add or suggest please do :(

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Good strategy on sticking to whole foods! I can tell you that I after my diagnosis, I started consuming gluten-free breads and desserts that I made or bought for my gluten-free husband for the past 13 years. I think my gut could not handle Xanthan gum. It could not handle lots of things. Things really improved when I ate whole foods and allowed time to heal.

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This is a weird diet to be on.  It should be basic.  No gluten and you will be fine.  NOPE!!!!  I started my diet 6 months ago.  sense then I now cannot have dairy and raw veggies kill my tummy.  I can eat some night shade veggies as long as they are cooked but not all.  I am very sensitive to the point of my cooking utensils.

I also cannot have brown rice.  Brown rice is gluten free.  It is trial and error all the time.  I could not take some B-12's they make me sick . I found a vegan one that is wonderful and by the afternoon after taking it I just feel better. 

 

 

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Sometimes meat, like chicken, is injected with up to a 10% solution of broth to make it taste better. This could contain gluten. I think you would have to call the manufacturer. I got sick after eating a precooked store bought chicken, but not from Winco's frozen chicken breasts. I am brand new, less than 2 weeks but I have been eating exactly the same things everyday except for the different chicken. It might just be me, though.

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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!

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Sometimes meat, like chicken, is injected with up to a 10% solution of broth to make it taste better. This could contain gluten. I think you would have to call the manufacturer. I got sick after eating a precooked store bought chicken, but not from Winco's frozen chicken breasts. I am brand new, less than 2 weeks but I have been eating exactly the same things everyday except for the different chicken. It might just be me, though.

 

 

"Broth" is usually water, chicken "juice" or salt.  IF it contains wheat, it must list that,  Cooked by the store chicken is completely different than raw chicken.

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"Broth" is usually water, chicken "juice" or salt.  IF it contains wheat, it must list that,  Cooked by the store chicken is completely different than raw chicken.

Good to know, thanks. I've been confused by this.

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Have you checked your supplements to be sure they are gluten free?  Not all are ...

 

I have been extremely sodium sensitive for over 40 years (since the birth of my first child).  I have to watch my sodium intake very closely. Soups, prepared anything, salt added to food, pickles, chips, snack foods, anything packaged.  I can gain 10 pounds of fluid overnight from high sodium intake (eating out, etc.).
MSG is also another culprit in my feeling generally lousy overall.
 

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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. 

 

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. 

http://onlinelibrary.wiley.com/store/10.1046/j.1365-2036.2002.01283.x/asset/j.1365-2036.2002.01283.x.pdf;jsessionid=C49CE5CAD2907CD7C22DF1A226A01973.f02t02?v=1&t=hv5uotc5&s=591a16ee22ae2d34c2d57464c0df379ed62518b3

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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. 

http://onlinelibrary.wiley.com/store/10.1046/j.1365-2036.2002.01283.x/asset/j.1365-2036.2002.01283.x.pdf;jsessionid=C49CE5CAD2907CD7C22DF1A226A01973.f02t02?v=1&t=hv5uotc5&s=591a16ee22ae2d34c2d57464c0df379ed62518b3

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.

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Ugh! It really irks me when people feel the need to talk down to others and tell them that they are wrong. Everyone has their own experiences and coming to a forum like this is all about getting multiple opinions. 

I think it is great that some people have yet to suffer from any vitamin deficiencies, either before or after going gluten free. Lucky them. Of course, one would have to be tested first to know whether or not they have any.

But it is not alarmist to mention that the lack of fortified foods in a persons diet could be the cause of new vitamin deficiencies. The whole reason foods are fortified is because it is difficult to get enough of some nutrients. And part of learning about nutrition is learning about fortified foods!!!!

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Ugh! It really irks me when people feel the need to talk down to others and tell them that they are wrong. Everyone has their own experiences and coming to a forum like this is all about getting multiple opinions. 

I think it is great that some people have yet to suffer from any vitamin deficiencies, either before or after going gluten free. Lucky them. Of course, one would have to be tested first to know whether or not they have any.

But it is not alarmist to mention that the lack of fortified foods in a persons diet could be the cause of new vitamin deficiencies. The whole reason foods are fortified is because it is difficult to get enough of some nutrients. And part of learning about nutrition is learning about fortified foods!!!!

 

 

Nutrition is not about "fortified foods", hon.  No one should  rely on fortified foods for nutrition.

 

Not sure where you are getting that information from, but it simply is not true.

 

And coming to "a forum like this" means getting valid info from veteran celiacs ( like Gemini)who are telling you how to negotiate the ropes of a G F life. No one is being condescending simply because they are presenting different opinions.

 

My husband went G F with me, of his own accord, after my diagnosis, and I can assure you, he is not "lacking" anything.

He is the healthiest person I know. (besides my G F mom who is 87) No meds, no problems whatsoever. His doctor finds him "astonishing". He is in better shape than anyone I know.

 

However, most gluten-free whole grains will give people the same amount of vitamins and minerals as any "fortified wheat product" we ate before DX.

 

Look at what Tricia Thompson, RD has to say. 

 

You can tell whether a food is enriched by reading the ingredient list. For grain foods, the B vitamins thiamin, riboflavin, niacin, and folic acid will be listed along with the mineral iron. 

 

http://www.glutenfreedietitian.com/newsletter/healthy-gluten-free-grains/

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I'm still very new to all of this, I was diagnosed a week before Christmas.  Up until a few weeks ago, I was still sick more often than not despite being gluten free.  My Dr sent me to a nutritionist, after talking she told me that I was still getting glutened from "gluten free" foods.  She restricted me to only certified gluten free foods or foods that were prepared in a dedicated gluten-free facility.  That made a huge difference, I'm super sensitive and get sick from a lot of "gluten free" foods.  Even with that improvement I was still not feeling that great.... so I changed to gluten free makeup and skin care products (my hair products already were gluten-free).  I noticed a definite improvement after that too. 

 

For the first time since the dx, I feel like I'm well more often then I'm sick.  ....in the past week, I also figured out that I was reacting to vinegar which is in a lot of gluten-free food.  It's frustrating but maybe you are still getting glutened somewhere?  

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    • I found when I went gluten free I started eating more dairy and that gave me worse stomach aches and bloating than the gluten did. So now I have to avoid gluten and dairy.  Maybe you have a similar problem with something you are eating.  I hope you feel better soon.  
    • Hi! I received my "official" celiac diagnosis last week. I had an endoscopy last month that was originally looking for ulcers and h. pylori, but they did some biopsies of my duodenum since they were in the neighborhood and the biopsy came back "consistent with Celiac's disease" and later. They urged me to get my blood checked and follow up with my primary doctor. My blood work came back negative, but my doctor was confident it's Celiac so told me to stay away from gluten. I've been completely gluten free (or to the best of my knowledge) for 2 weeks now, and my results are mixed. At first, I felt great! My stomach was no longer CRAZY bloated once I stopped eating pasta and bread, my acne started healing, and the red rash on the back of my arms started to fade. That was the first few days. Lately, though, my acne is once again flaring up and I've been SO EXHAUSTED. I feel so tired all the time. Even now I have fatigue in my head, limbs, and I could hardly walk or move my body earlier today. I'm overweight and I like to go to the gym, but what used to be an easy workout for me is kicking my ass! I used to go to the gym and tear it up: HIIT on the treadmill followed by 40 minutes of heavy weight lifting. Now I can hardly finish 3 reps in my first set without feeling like a nap. I can't run anymore because my body feels clumsy and heavy. Also, I'm still bloated. I don't suffer from painful, acute bloating, but I struggle to pass gas and I look like I have pregnant belly. I think I'm also retaining water all over my body, and I'm not sure if that's normal? For whatever reason, I have this belief that water is mainly retained in the core and not arms, legs, and face. Anyway, I'd love to hear what you have to say/what you've experienced. Is this typical to first going gluten free?
    • Thanks Stephanie & Gemini for the info. that the 4 of 5 doesn't apply to children. I wasn't aware of that until now. 
    • I think the posters above have given you very good information and I will throw in my 2 cents worth.  I am surprised that they did not test her DGP IgA also.  I am sure that would have been positive.  They switched off with antibody classes and usually they do both tests for both antibodies.  IgA is more specific to Celiac but the IgG is also useful.  The testing shows your daughter is producing antibodies to the gluten in her diet. (DGP IGG). THe tTg shows positive for some damage or inflammation. You know........your daughter is only 4.  She hasn't been on the planet or eating gluten that long. It can take years for enough damage to occur for it to be able to be found on biopsy.  I would say it is highly likely that this is Celiac, especially with her symptoms. But because the damage hasn't graduated to bad enough yet, they won't diagnose her. I think you need to do what others have said and get all copies of testing and find someone else who will take a look and give a diagnosis, especially if they have you do a dietary trial and her symptoms go away.  That might be the only recourse if you want faster proof. I know I would want faster.  I would not really be happy if I thought I had to keep feeding her something that was making her sick.  If you keep her on gluten long enough, the diarrhea will probably show up. BTW.........the criteria mentioned regarding diagnosis does not apply to kids.  I know it's silly and stupid but most leading Celiac specialists do not go by this criteria for kids.......adults only.  Keep that in mind because it might come up.  You could recognize it but they might not. Have you considered gene testing, to help bolster a diagnosis? As far as false positives go, it's the other way around. False negatives happen more frequently than many people think.  It's a recurring theme here.  With her symptoms, which is what I had, a bloated belly and tummy aches are telling.  Have they tested her for lactose intolerance?  That can cause similar symptoms, although it sure won't raise those 2 blood tests.  Keep looking for Celiac because there are many red flags here.
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