Those Of You That Are Gluten Free--Did It Help You And Did You Get Tested?

[dkd]

Hi all,

I've been trying to eat gluten free for about three weeks now. I'm not sure if I feel any better or not, so I'm wondering about other peoples experiences.

I'm also wondering if any of you were actually tested for gluten sensitivity? I'm debating whether to go to the doc and ask for a test. I hate to think I can never have birthday cake or a piece of pizza again.

My family (hubby and teenage son) thinks it's just a 'fad' thing right now and I've been watching too much of the Dr. Oz show-haha!!

Thanks

[JuneFlower]

I have been tested for celiac and so has my daughter (with POTS). We are negative . But I just started gluten free. Can't wait to hear the answers here!

June

[Goschi]

I have been tested negative too. However, I went gluten free for 5 weeks and didn't feel any difference at all. I would even say that I felt actually worse during that time, but this may be a pure coincidence due to the regular waxing and waning of my symptoms. I eat "normal" since then - at first I slightly improved, then recently got worse again. At least for me gluten doesn't seem to play any role at all.

[looneymom]

My son tested negative on all his testing( gluten tissue sensitivity and food allergies). However, there are some disease like lyme, coinfections and mycoplama) that need gluten to survive in the host body. From what I have read and researched, going gluten free should help a compromised immune system. So if you are having some immune related problems sometimes this will help. Some doctors do put patients on this diet to help with the immune system.

For example, bacteria like Lyme use gluten to survive in the host and for this reason some doctors will not treat unless the patient goes gluten free. Mycoplasma bacteria also likes gluten. So I could do this diet with Tyler, however, he is already deficient in certain nutrients that are found in wheat germ, eggs, and dairy products. His doctor feels like we could do more harm than good. However, if we can get the infection out of his system, then going gluten free for a year might help boost his immune system. For Tyler it's a catch 22 because he is a growing teenager and in puberty. So good nutrition is very important with any illness that has immune related issues. There are other people on the forum that have chosen to do this diet and hopefully some of them will speak up and share their experiences. I have read that you need to give this diet at least 3 months to see if there is any improvement but some people notice improvement within a week.

[*Merlin*]

For me, it did help. I have always suffered with "digestive issues" and, suspecting a food intolerance, consulted my GP. She dismissed the idea straight away, despite my symptoms, gave me a leaflet on healthy eating and ushered me out of the room.

Ignoring her (quite frankly rubbish) advice, I decided to tinker with my diet. At first I thought it was a lactose intolerance, so I cut out dairy. Within 48 hours my eczema began to clear (along with a few other symptoms I'll keep to myself!). However, I still had regular bloating and abdominal discomfort. Months later, I decided to go gluten-free as well and, as if by magic, these two issues all but vanished.

I don't care whether I have food intolerances or this is little more than a placebo effect, I feel and look better for it. I'm not as slave to it though, after all, a little now and then won't kill me. So if I'm offered some cake or a sandwich at someone's house, I don't like to cause a fuss and I'll accept without mentioning my dietary woes - I merely suffer the consequences later!

I guess it all depends on which symptoms you are hoping to resolve. It has had no effect on my POTS, but has helped my digestion. I don't know if they are part of one related illness or two separate issues (and my GP has no interest in finding out so, no, I haven't been tested).

[kayjay]

best thing I've done for my health. I went gluten free on my doctor's suggestion. It was really hard for me mentally so I did get genetic testing.

I do not have the IBS I was diagnosed with. It's gluten. I am 100% gluten free. It took me several months to notice a difference. It's been about 4 years for me. I only wish I had done it sooner.

[E Soskis]

I went gluten free for a summer and did not notice any difference in my GI symptoms. My physician said there was no need to test me since I didn't respond to the diet. I found it to be cumbersome, expensive, and was miserable the entire time I was on the diet.

[writerlymom]

I was tested and negative for celiac but have gone mostly gluten free on a naturopath's suggestion. I tend to feel better when I don't eat it and some minor skin irritations that I used to have cleared up. Not sure if the skin stuff is just coincidence... and gluten-free probably means lower carbs in general, so that could be why I feel better without it.

[badhbt]

I have to say that gluten did help my POTS symptoms. In fact I was able to go off of my beta blockers and other POTS medications. I noticed a big difference within 3 weeks, especially with the brain fog. I decided to not be tested because you have to eat gluten for awhile and when I eat it now I really pay the price.

Looneymom mentioned the reason it works for some people is because of lyme. I did test positive for lyme through IGENEX so this may be the reason. I am just happy to feel better.

Oh, and there is great gluten free pizza and cake I had some today

[Gemma]

Hi badhbt. Which cake and pizza you get. I am gluten free also.

[castronovo112587]

I changed my diet completely back and in September. Not wheat, dairy, soy, eggs, or peanut. It took 3-4 to really notice a drastic difference. I also do not eat anything processed or GMOs and I felt 75-80 percent back to myself. It is unbelievable how much better I feel and if I happen to cheat every once in a blue moon and eat processed or GMO food at a restaurant my headaches and some other problems will come back for a few days. Just hang in there you may feel worse at first before you feel better as your body is riding you of all of the gluten and wheat, it has to re adjust. My major diet change along with drinking apple cider vinegar and eating a raw clove of garlic every day has me back to almost normal onost days. I have a day here and there if I don't get much sleep where I feel a little icky.

[castronovo112587]

Most*

[dkd]

Thanks everyone for sharing your experience. I'm still sticking to it though it's hard when I go out to eat. I thought I was doing ok a couple of nights ago by ordering pad thai (rice noodles) but it must have had something with gluten in it (soy sauce maybe???) The main thing I was trying it for was an itchy rash on both sides of my abdomen, right above my hip bones. That seems to be better, so I was hoping for some relief of my dysautonomia symptoms also, but I haven't noticed any yet.

[writerlymom]

Could be gluten in the soy...I also know someone with POTS who is affected by maltodextrin or other preservatives, which are in a lot of foods.

[kayjay]

Most soy sauce does have gluten.

[lfreem02]

I tried a gluten free diet for four months, but it didn't change anything. I also didn't test positive for celiac, or gluten sensitivity.

[Alison]

I went gluten free 3 weeks ago. I've been thinking that the benefit for me might not be not eating gluten, but the fact that I am now eating a much more varied and healthydiet - for instance today, instead of a wheatbased cereal for breakfast followed by toast and butter, I had porridge oats with almond milk, ground chia and flax seeds and a banana followed by some homemade vegetable soup.

[dkd]

Revisting my thread---Last Friday was FREE FOOD at work so I couldn't pass that up, right??? We had sub sandwiches and big cookies and pizza-- I totally glutened out--haha. So, my itching returned, I felt bad, bloated, constipated, stomach pains. I don't think I need to be tested. I'm pretty sure I'm allergic or intolerant. I'm just now feeling better today. I don't think it affected my other dysautonomia symptoms, but it definitely affected my body. So back to gluten free for me!!

[Tuesday]

I have been gluten free for over a year now, and it has definitely helped with some symptoms. The primary benefits for me are reduced brain fog, dizziness, fatigue, and body aches/joint pain. I've seen some reduction in GI symptoms, but I still have a lot of problems in that area.

I can definitely tell when I cheat - the next day or two I feel awful and I crash pretty bad.

I was not tested officially, but during my last endoscopy my doctor told me that I had esophagitis, gastritis, and duodenitis, all which would be consistent with celiac, but the villi were intact (where as if I had celiac, they would be cut off). So my body is definitely reacting to it, but it doesn't appear to be celiac.

[pink1975]

I suspected gluten issues long before I had ever even heard of POTS. I went through all of the tests, blood tests, endoscopy and even a stool test (the stool test was on my own dime, through Enterolab, which doesn't actually diagnose celiac, just if you have antibodies in the stool). The blood tests and endoscopy were negative for celiac, but the stool test was off the chart into the positive range. I stopped eating gluten and my gastro symptoms are gone. Of course, this was prior to the POTs diagnosis 16 months ago. I was STILL ill and looking for a doctor to help me. The wonderful Dr. I found not only put CELIAC in my chart to prevent any other Drs. from blowing me off because they don't "Believe" in gluten sensitivity in the abscence of positive blood tests, but she helped me get my POTS diagnosis by realizing there were issues that should be referred to a cardiologist. Also, some people with gluten sensitivity also have lactose intolerance so this could be something to consider.

[trappedat20]

I just started the Paleo diet this week although this week is my experimentation week. I'm going to eat Paleo all day and then eat one of the no no foods at night to see which ones make me sick. So far processed food is a no go and too much sugar is a no go. I'm trying grains, starchy tubers (potatoes), legumes, dairy, and a gluten free grain in hopes that maybe if a grain is gluten free I can eat it. I'm trying to see which foods make me sick in case theres any chance I don't have to give them all up. Next week I'm going to start the Paleo/ Wahls Protocol perfectly. There's a video on youtube called Minding My Mitochondria about a woman who cured her MS with a version of Paleo called Wahls protocol. I heard fantastic stories about others experiencing success with it too. I think whether or not it helps you all depends on if you have a gluten sensitivity and what your primary condition is. You can always have a cheat meal a week too or every once in a while to make it easier for you. You might decide that you feel much better without the cheat meals and that the feeling after a cheat meal isn't worth it. It all depends. Good luck.

[kayjay]

Just wanted to add like Pink mentioned, I also used EnteroLab. Dr. Whals had her family members tested trough this lab (I just read her new book).

In my case it was completely accurate. It also showed that I react to casein (a dairy protein). I'm just now starting to deal with that.

Please consider that many people don't feel better off of gluten for a LONG time. I think it took me over six months but I'm not really sure.

I'm convinced I never had "IBS", It was gluten. It also is oddly helpful now that if I get gluten accidentally, I'm really sick.

Don't mean to monopolize your post but I'm totally a convert