Article On Gluten Sensitivity

[MomtoGiuliana]

Thought this article might be of interest to many on the forum:

http://www.huffingtonpost.com/dr-david-perlmutter-md/gluten-impacts-the-brain_b_785901.html

[sue1234]

Thanks for posting this! I am one that was investigated for celiac, but endoscopy looked clean. I was told not to worry.

HOWEVER, the antibody this doctor mentioned in the article you just posted talked about the anti-gliadin antibody showing gluten intolerance. My anti-gliadin antibody was 42 (0-10)! I asked if that was significant, but a couple of gi docs said that "I don't have celiac". I think they are lacking in training in that area. No, I must not be celiac, but possibly gluten intolerant with levels that high!

I really, really need to go 100% gluten free.

[Sallysblooms]

I went Gluten Free four months ago. I did it because of what I had read about how it affects the nervous system in some people. Very interesting. I did it for my POTS.

[Ashelton80]

I have been gluten free for a little over a month and I can't tell you how much of a difference it has made in the way I feel. Between that and wheatgrass shots for building red blood cells I am very excited about hopefully continuing to see progress!!

[Ashelton80]

I have been gluten free for a little over a month and I can't tell you how much of a difference it has made in the way I feel. Between that and wheatgrass shots for building red blood cells I am very excited about hopefully continuing to see progress!!

Oh and I tested negative for Celiac too. I'm so glad I don't always listen to Dr's. If I slip up and get some form of gluten, within 10 minutes I have a headache and little small pains in my arms going up to my neck. It is crazy how much it effects me and until I removed I had no idea how much.

[sue1234]

I talked with my husband last night, and we decided we will both go gluten-free for at least a month for him, forever for me. He has odd symptoms, such as joint aches, insomnia, and a few others. He works all day and functions fine, I just see that he is not feeling 100%. So, we are going to give it a try.

[Noreen]

Sue-

Let us know how it goes. I bought Gluten Free for Dummies but that is as far as I've gotten.

[Sallysblooms]

I have been Gluten Free for four months. I have no symtoms or celiac etc. I did it after reading a lot about how gluten can affect the nervous system. Very surprising. I did it for my POTS.

It usually takes longer to really get benefits, but if you are really sensitive you may feel it fast. I am impoving with my POTS.

Most doctors don't know about how it affects you unless it is just Celiac. You have to do it yourself.

[MomtoGiuliana]

I've considered trying going gluten free. I did get tested and was negative so I figured at the time that was not the answer. However, seeing this article makes me think about it again -- it certainly is not harmful to try it out and see--just I imagine pretty difficult. So I think (after the holidays) I will try again for a few months and see how it goes. My symptoms are generally mild to begin with, so I don't expect anything dramatic in my case!

[Birdlady]

My husband and I have been very strictly gluten free for over a year now. I don't think it's done anything for my POTS, but I believe my digestion is a bit better. I still have issues and don't know what else I could restrict at this point...

When you go gluten free, you have to be completely 100% gluten free. I recommend watching out for cross contamination too. To truly know whether or not it's helping you have to clear your kitchen out of all gluten. Throw out old condiments that could be contaminated with wheat from a knife or spoon. Your toaster probably needs thrown out too because of the bread crumbs inside. I'm sure there's many websites that can give you some pointers on how to be gluten free.

Ashelton80, There's some debate whether or not wheatgrass is safe for those on gluten-free diets. Might want to look into that more. Edit: The more I look into it, wheatgrass is NOT safe on a gluten free diet. The risk of contamination is extremely high.

[roxie]

Does anyone know if the gluten antibodies (IgA & IgG) have anything to do with antinuclear antibodies? I don't know if I've been tested for gluten but I know I have high Ana. I obviously have POTS & have tons of GI problems that seems like nothing fully helps so this article makes me wonder? Maybe I'll talk to my dr next time I go

[MomtoGiuliana]

Dana--thanks for the pointers. I wonder if it depends how sensitive you are how important this is. I just say this b/c I have two friends who have full-blown celiac disease (all the classic symptoms led to the diagnosis). They live with their non-wheat free diet families and I do not see them practice this level of avoidance--yet they are symptom-free (as far as I know).

[Ashelton80]

Yes I would think it would be dependent on your sensitivity. Dana, if you haven't seen any results or reduction in symptoms from being gluten free for so long then what is the reasoning for sticking with it? For me personally I can see a difference within 2 weeks of going gluten free. My brain fog is reduced dramatically, my ability to handle my POTS is increased and my aches and pains are drastically reduced. I am not Celiac so it isn't necessary for me to take all the precautions of cleaning out toasters etc. It's about reducing the load of gluten on my body. I don't eat any gluten, but if I got cross contamination it wouldn't be that dramatic for me like it would a true Celiac.

As far as the wheatgrass I have researched this myself and have found that most wheatgrass is far too young to contain gluten which is what the majority of people are allergic to in wheat. Again, I am not celiac so it's not an issue. I have also found in my personal experience that they are giving me so much positive benefit that I don't care if my research is wrong. I have gotten dramatic results after shots everyday for 2 weeks. There was another girl on the Facebook POTS page having similar results with the wheatgrass shots. I need to post the article (i did on the facebook pots page), but wheatgrass is 70 percent chlorophyll. Chlorophyll is very similar in molecular structure to human hemoglobin. So it helps build red blood cells. Not only that it has detoxifying effects. The weirdest thing from taking them is I have zero body odor. Coming from a person who I always thought I was just way more "stinky" than most people and would need to slather deodrant, that alone is worth it! I'm sure my husband appreciates it anyway. LOL

[Birdlady]

Saying that you can have some gluten because you are only "gluten sensitive" is blissfully ignorant in my opinion. Regardless whether you have Celiac or a gluten sensitivity it is negatively impacting you and I feel you should be watching cross-contamination no matter what type or level of sensitivity you have. If you are using a toaster that has toasted bread it is just asking for trouble. How will you ever know if any lingering symptoms are still from gluten? We threw out our cutting board, strainer and toaster oven and started over again.

I recommend reading this.

http://www.dummies.com/how-to/content/the-essentials-of-sharing-a-kitchen-with-gluten.html

I treat gluten as if it were poison in this house. You wouldn't let poison into your house no matter what tiny amount it may be! Edit: I thought of a better example. Pretend gluten is raw meat. You wouldn't let raw meat touch something you were about to eat that is not cooked. You also must clean any counter tops that came in contact with the raw meat too. Gluten should be regarded like this.

I have heard of some people who have no symptoms with Celiac, yet those with gluten sensitivity are much worse, so it depends on the person for sure. I don't think I am Celiac and maybe not even gluten sensitive, but overall it is better way of eating as you are forced to remove all processed foods from the diet and start eating meals from scratch. We do not replace pasta or breads as I find I'm never happy with the GF versions. I've also recently given up all grains and sugar too. I'm quite happy with the results thus far, but it has done nothing for POTS. My POTS is separate from the other symptoms I experience and do not lump them all together.

My POTS is not better, but as I said my digestion is so I have stuck with it for this long. I figure anything that might trigger a response from my immune system needs removed from my diet. The most helpful thing I've removed is actually all forms of yeast. My husband got genetic testing done through Enterolab and he has two genes that point to gluten sensitivity. His stool test showed very high antibodies to several gluten markers as well. I went gluten free for him because it is nearly impossible to be gluten free in a house with others eating gluten. There will always be the risk of cross contamination as people who aren't also watching for allergens and sensitivities don't care or understand the importance.

[Ashelton80]

If you read my post correctly you will notice that it says nothing about eating "some" gluten. I do not. I simply said that I don't feel it's necessary to take such an extreme approach. For me personally, I am not going to exhibit symptoms from a tomato brushing up against a breadcrumb. I speak only from my experience, but this is all more of an art than a science. How will I know if I have lingering symptoms? The whole basis of food intolerances/sensitivites is an elimination diet and then re-introduction. Did you do this? I did and I assure you that I know when I have come into contact with it. Most of my symptoms (ie headache, aches and pains, etc) return. Sometimes they return horribly and sometimes they are very mild. It all depends on what and how much I have been exposed to. I just don't sit around and try to poke holes in what works for some. If Elizabeth over at potsrecovery got her life back due to exercise then by gosh isn't it worth a try no matter how "flawed" in someones opinion the study was. Or if I had of taken your advice and not taken the wheatgrass shots because of a slight risk of "cross contamination" then I would be missing out on some amazing benefits. There is no right or wrong way in any of this.

I would encourage you take a look at your approach and tone when you write. Using phrases like "blissfully ignorant" when trying to convey a point or having your opinion or voice be heard doesn't usually bode well for most people. At the end of the day, it's all about what works for you and what works for me. And I have far too many other things to worry about than year old breadcrumbs in my toaster, but again thats just me.

[MomtoGiuliana]

Perhaps this is helpful.

As I said I know two people with celiac--diagnosed due to classic, rather dramatic GI symptoms. Both co-exist in a non-gluten-free home. I know one gets very sick if she eats, say, a standard chocolate chip cookie. Smaller amounts of contamination, I don't know about symptoms -- but as it points out below, even small amounts are harmful.

What I am unsure about still is if there is a definitive blood test for gluten intolerance, as opposed to Celiac disease.

Katherine

http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#symptoms

The only treatment for celiac disease is a gluten-free diet. Doctors may ask a newly diagnosed person to work with a dietitian on a gluten-free diet plan. A dietitian is a health care professional who specializes in food and nutrition. Someone with celiac disease can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvement begins within days of starting the diet. The small intestine usually heals in 3 to 6 months in children but may take several years in adults. A healed intestine means a person now has villi that can absorb nutrients from food into the bloodstream.

To stay well, people with celiac disease must avoid gluten for the rest of their lives. Eating even a small amount of gluten can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person’s age at diagnosis, some problems will not improve, such as short stature and dental enamel defects.

Some people with celiac disease show no improvement on the gluten-free diet. The most common reason for poor response to the diet is that small amounts of gluten are still being consumed. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers made with wheat. And because many corn and rice products are produced in factories that also manufacture wheat products, they can be contaminated with wheat gluten.

[MomtoGiuliana]

This addresses celiac vs gluten intolerance:

http://www.gluten.net/downloads/print/glutenintoleranceflat.pdf

There are no medical tests that can be performed to confirm gluten

intolerance. An elimination diet and ?open challenge? (monitored reintroduction of

gluten-containing foods) are most often used to evaluate whether health improves with

the elimination or reduction of gluten from the diet.

[issie]

Well, I'm finding a glutten free, sugar free and dairy free diet to be helping me also. I've been doing this for about 7 weeks now. I find that my neuropathy is getting better, my energy levels are improving and I don't have as many POTS eposides. I'm being able to exercise more and I'm losing weight.

I've been checked for celiac and do not have it - but I do know that I'm sensitive to it. Since finding out that my autoimmune system is not right and doing research on what to do to improve it. And also, the doc wanting to check me for MS - what to do for that - all autoimmune related. One of the most spoken of things is a diet change. If a diet change can help the autoimmune system to calm itself and correct what meds are not able to accomplish - it's worth a try on my part.

I'm hoping to continue to improve. I've proven to myself that the elimination of these things are beneficial to me - by messing up and having them and noticing the reaction that occurs with the mess up. I'm fortunate that my hubby is doing the diet with me and we are really trying to stick with it. I would suggest a trial for everyone - since there is a question as to whether the immune system could be possibly playing a part in POTS. We could all take allot of pills and put a bandaid on it - but if we could get to the root cause and make the necessary changes - even though REALLY HARD - I think - it will be worth it. I can give up a few foods to get my life back again. And, I really don't want to create more issues for myself with meds that can cause other side effects.

I'm also taking the Immune Formula of Colostrum which are natural immunogloblins and also olive leaf which is a natural antibiotic. Natural ways of helping the immune system. So far, so good. I think digestive enzymes and probiotics are necessary too. One other one on my "have to have list" is tumeric that helps with inflammation and pain.

How's everyone doing that decided to do this diet - as this is an older post?

[kayjay]

Gluten free has really helped me. Yesterday... no nap. It takes a long time ( for me anyway). I went GF totally in September and had been mostly GF before that.

If you have been told you have IBS... I really think it is work a try. With IBS it can be hard to absorb what your body needs from your food. Yesterday I cleaned my closet. I was quite impressed with myself I still have POTS and other issues but I take any little bit of improvement I can get! Good luck to all of you. Thanks for sharing this info!

[sue1234]

I want to go GF, but can't stand up long enough to cook. I really need a personal chef to come cook some meals(and that's not going to happen!).

I really do believe it would help me, just don't know how to get it going.