Gluten And Dairy Intolerant

[hilfgirl33]

Hi! I was a member here a long time ago but haven't posted in a while. I remember a few people's names (hi Nina, remember me? )

I have had POTS for about four and half to five years, but think I've always had some issues through my life. I was really bad at the onset but steadily improved to a semi-functional level. I work part time, take care of kids, keep the house up, just feeling really exhausted four days out of seven.

My son was showing signs of fatigued hyperactivity to me (he is 7) and he has asthma and allergies. We ran the gamut of doctors, pulmonologists, allergists etc. I finally tried an integrative doctor for him and then went myself. He feels pretty strongly (as does the nutritionist he referred us to) that we both are gluten and dairy intolerant. Well, I knew we were both dairy intolerant. I just took a test today for something called a leaky gut. And we are going gluten free.

The question I have is how many of you are sensitive to foods? Because I have been for years and I thought it was a carbohydrate intolerance but now I really think it is celiac or gluten intolerance. And for those who have gone gluten free, how has it improved your POTS? Were you diagnosed celiac? Because I don't think my body can tolerate the endoscopy/biopsy for that as I have had major problems with anesthesia.

Thanks for any input.

[MightyMouse]

My gastro has dx'd me with celiac/sprue. I have been gluten free for many years. It didn't change the fact that I have dysautonomia, but when I stick to the diet, my guts are happier--less episodes of diarhea and/or constipation. Other than that, I notice that my muscular aches and pains are slightly lower when I'm careful with my diet. Cheating for me isn't terrible unless I do it repeatdly or in a big way--then I get increased fatigue, muscle pain and severe gi bloating and alternating dia./const.

Nina

ps., yes, I remember feel lucky b/c I can't remember my own phone # sometimes

[gwen]

my allergy is yeast and malt. malt is in everything. i eat very little bread but every 4 or 7 days will allow a little but i pay for the treat. try to schedule around not having abusy brain day the next day.:-)

[hilfgirl33]

Nina, I am honored you remember, especially because I know exactly what you mean...

Gracie, I see you have leaky gut, how were you diagnosed with that? I just took a intestinal permeability test this morning and I am waiting for DHL to pick it up now to take it to the lab. The drink made me feel terrible for a while, and my face still looks kind of funny from it

[Tessa]

Hi Elaine

I am gluten and casein intolerant. You do not need to carry out a gastroscopy and blood test to get the diagnosis. There is a new accurated test, which is much easier and painless: a stool test. It is carried out by a Laboratory called Enterolab.

Take a look to their website:

https://www.enterolab.com/Home.htm

From my own experience, it is much simple, painless, quicker and you are sure about the results.

I hope this can be of any help,

Take care,

Love,

Tessa

[persephone]

I'm gluten and dairy intolerant, but as my autonomic dysfunction seems to be improving, so too are my intolerances- I can now tolerate some chocolate, milk=based food, wheaty stuff etc. THere is hope!

[hilfgirl33]

Thanks so much for your input everyone. So I'm gathering for the majority of you it improves how you feel but doesn't solve the POTS problem?

Tessa, thanks for the info on Enterolab. I am considering it. I hope that my doctor/insurance will cover it as I don't work much anymore and the budget is tight. I will talk it over with my integrative doctor in a few weeks.

Also, In reading about celiac, I thought that you had to be totally gluten free forever to heal your gut and not let it get damaged again. Have you all be told something different? I know it's a hard diet to follow (if not nearly impossible in this day and age).

[Tessa]

According to my experience eating gluten while being gluten intolerant can cause many other diseases not related with your gut, so it is also to avoid more diseases and health problems that one has to follow a strict gluten free diet. In fact, it is said that when someone eats gluten (being gluten intolerant), there are more possibilities to develop Cancer... I have a friend who - among other problems - was unable to open her right eye and after starting the gluten free diet, her general health has improved, and she is able to open and close her eye...

Have you read the website I mentioned? There is a list of diseases related with gluten intolerance. As you can see, we can develop many other diseases...

Take care,

Love,

Tessa.

[desiree942]

I am diagnosed as gluten intolerant and going gluten free improved most of my gut problems but very soon after going GF I got full blown POTS. None of my POTS symptoms got better eating a GF diet. Dr. Grubb feels that any of the autoimmune disorders associated with the gut such as chrons, ulcerative colitis and celiac are potential triggers for POTS and I think this was my problem. If you have not had an endoscopy and it is covered under insurance it really is considered the gold standard. My endoscopy was postive though all my blood work, including the $450 genetic test was negative. I guess it's common. It doesn't hurt to try living GF and seeing how you feel but do any testing for celiac BEFORE you start a diest to avoid false readings.

[Tessa]

That?s interesting. I started my GF & DF diet in August 2005 and, although I had some POTS symptoms, I also got full blown POTS around September 2005.

I also thought it was strange that I started feeling worse of POTS after starting my new diet. Furthermore, I also have Microscopic Colitis, which is an autoimmune disorder. If these disorders are potential triggers for POTS, what else can we do?

By the way, my blood test was negative for celiac, as well as the endoscopy. Having these tests negative does not rule out the gluten intolerance.

The tests at the Enterolab Laboratory (stool tests) were positive for gluten and casein intolerance. You do not need to eat gluten if you want to carry them out, but if you want to follow the testing for celiac (endoscopy) do not start the GF diet before. (But remember, a negative endoscopy result will not rule out if you have intolerance to gluten)...

Take care,

Tessa

[MightyMouse]

With celiac/sprue one is supposed to be completely gluten free b/c repeated long term exposures to gluten dramatically increases the incidence of cancers of the gut in people with ceoliac/celiac/sprue. I've been g/f for many years--with occasional cheats (my crazy idea of going on nutrisystem notwithstanding... lost weight, yes, felt horribly sick oh my gosh yes--the increased protein in those meals come from gluten aka wheat starch, aka textured vegetable protien).

look here for resources, including g/f food lists, places to buy from, forbidden food lists, etc.

http://www.celiac.com/index.html

Nina

[Ling]

I have reactive hypoglycaemia. I cant eat anything with sugar. Plus after the pregnancy I have gotten worst. Even more sensitive to sugar than before I was pregnant. My daughter is gluten intolerance. Its a nightmare diet to follow. Where I live you don't get any gluten free products. My cousin posts me food so that I can just eat one "normal" meal a week. I am very hungry, but breast feeding is very important to me. Plus you just have to have one session with Britney screaming for 3 hours to never eat gluten again.

[hilfgirl33]

Well I have been gluten free for 6 days now and I can say my POTS symptoms are definitely acting up. I have read on celiac.com that you can have gluten withdrawal and I'm hoping that is the case. My bowels feel better but my POTS definitely doesn't. If this continues to be the case, I almost would consider going back to gluten on a light basis.

For those who had worsening of your POTS, did it go on for long then settle down? Because maybe it was a withdrawal factor that triggered it. Some of the celiac.com people said they had withdrawal for as long as a month to six weeks.

[desiree942]

Dr. Grubb explained to me that with an autoimmne discorder like celiac/gluten intolerance, once you take away the gluten and there is nothing for your body to attack in the gut then it might go on to attack someplace else in the body, such as the ANS which might = POTS. That doesn't explain why the POTS gets worse but Dr Grubbs repsonse was "it wouldn't surprise me"

2 years later and living GF and on meds my POTS flare up has calmed down to a steady set of symptoms. If you are truly gluten intolerant there are long term implications of eating gluten.

[hilfgirl33]

Dr. Grubb explained to me that with an autoimmne discorder like celiac/gluten intolerance, once you take away the gluten and there is nothing for your body to attack in the gut then it might go on to attack someplace else in the body, such as the ANS which might = POTS. That doesn't explain why the POTS gets worse but Dr Grubbs repsonse was "it wouldn't surprise me"

2 years later and living GF and on meds my POTS flare up has calmed down to a steady set of symptoms. If you are truly gluten intolerant there are long term implications of eating gluten.

Thank you.

I have decided to go gluten light for a while and see how that goes.. I know my body well enough to know it doesn't like any drastic changes. Who knew that eating really well for a week would make me sick. I had one piece of toast this morning and will continue to eat GF for the most part and just include some gluten until I get some more answers from some tests I have not gotten the results of yet.

I know the long-term ramifications and I am going to just see how this develops before I decide which way to go. I feel torn, like why make myself bedridden again when I had regained so many freedoms, just to prevent stomach cancer when I am 60. I'd rather have 20 more good years with my kids than 30 more bad ones. That's what I'm thinking now, but that is subject to change.