Hello, I'm New To This As Is My Son

[elaine33]

Hi All. My name is Elaine and I am very close to turning 40 years old. I live in Pennsylvania with my husband and two children. My 7 year old son has had allergy issues since he was an infant, with rashes on his face, gas, breast and formula intolerances, terrible colic finally dx with mild asthma not significantly helped with a lot of the coventional medicines. I have recently taken him to an integrative doctor at Thomas Jefferson University (and then subsequently myself). He felt he has significant food intolerance issues and referred us to the nutritionist who is really basically convinced without testing on him (I am to have an intestinal permeability test for leaky gut) that we have several food intolerances mainly being wheat/gluten and dairy for starters, and mine has progressed on to leaky gut.

I have been very sick for a long time with neurologic type symptoms (POTS, orthostatic hypotension, brain freezes, intermittent numbness, stomach issues, rectal spasm, endometriosis, PCOS, exercise intolerance, recurrent miscarriage , infertility, so on and so on) and my family history is significant.

I know wheat bothers me and I avoid it in the whole grain department, but do eat pasta which makes me feel like someone is blowing air into my head, and with too much will cause stomach distress and diarrhea, and pretzels. Whole grains absolutely kill me, including oats. I have given my son whole wheat pasta twice and he double over in pain twice. We are both intolerant to milk, although I seem to be able to eat some cheeses without significant distress as does he (and yogurt) but according to the nutritionist, even though we are not feeling the pain, these foods are causing us harm.

I see that you all have gone through numerous tests to be diagnosed with this. What tests do you think are worth pursuing or should I say no to.

Is celiac similar to leaky gut?

I'm sure I have a ton more, I'm just a bit overloaded with information right now. Thanks.

[HawkFire]

This is what I know. You must avoid all gluten grains. You must be 100% gluten free 100% of the time. If you "cheat" or taste a gluten containing food product, you will become ill, turn your immune system ON in a very dangerous way and suffer until your body feels that the danger has passed. IN the meantime, you will suffer long term consequesnces by stimulating this negative reaction from your immune system. You are playing with fire. You must stop consuming all gluten.

Many have done it. Many live entire lives with no gluten entering their bodies. You can do it too. You have to lose the "diet" mentality that is so strong in American culture. This is not a "diet" as you have come to understand it. It is a MEDICAL NECESSITY, your medicine, your child's medicine. It is a fact of life for you that you will have to come to terms with. You wouldn't skip diabetic medication, you wouldn't eat a pound of sugar if you were diabetic, you wouldn't skip your chemotherapy if you had cancer, you wouldn't leave your glasses at home if your eyesight was 20/400, you wouldn't NOT clean your child's scrapes, you wouldn't eat rat poison.... You must not eat gluten if you have this diseaes. You must teach your child how to honor his body as well as you model how to honor your own. He is just starting out. You do not want your child to be able to rattle off a list of ailments he has in the future the way you did in your post. He will have a very short list of medical problems if you teach him to be 100% gluten free NOW> Best of luck.

[lucaswe]

Elaine,

Many of the symptons that you have listed, including miscarriage, can be related to Celiac

Disease. For your son, I would recommend Children's Hospital of Philadelphia. Dr Ritu Verma

is head of pediatric gastrointerology and knows of Celiac first hand (she is also the medical

advisor for the South Jersey support group). Although they do not test adults, they have started

doing genetic diagnosis on adults and children. An endoscopy of the small bowel is the gold

standard test for celiac disease (although if someone's been on a gluten free diet for awhile,

the damage may not be as apparent).

I have been gluten free for 32 years.

Bill

[Jestgar]

Hi Elaine, and welcome.

There are a variety of tests, and all of them require that you continue to eat gluten. Some of us are self-diagnosed, we stopped eating gluten and discovered that we felt so much better that it wasn't worth continuing to feel bad just to convince a doctor.

I know it feels like you're caught in a windstorm and you don't know what to grab, but grab yourself a cup of gluten free hot chocolate and spend some time researching your options, either on this forum or other resources.

[nikki-uk]

Hi and welcome!!

You both sound as if you could have symptoms of celiac disease.

Are you and your son still eating gluten??

If you are you should get blood tests done.

These are the tests you need for the celiac panel

Antigliadin (AGA) IgA

Antigliadin (AGA) IgG

Anti Endomysial (EMA)

Anti Tissue Transglutiminase (tTg) IgA

Total Serum IgA

Depending on the results of these tests as to whether you go on to have an Endoscopy with biopsies taken of the small bowel to confirm celiac disease.

Of course,there are plenty of people on these boards who don't have 'an official' diagnosis - and who've had no tests. They just know they feel a whole lot better if they cut out all gluten

Good Luck!

[elaine33]

Thanks for all the information.

We are still eating gluten as this is all just now coming to light for us. I have to say I am feeling so frustrated right now as I have had symptoms of this for years, have told numerous doctors about this, have seen specialists, neurologists, cardiologists, endocrinologists for all of my health problems and no one has ever mentioned food allergies causing this to be my problems. I have had my son to so many different doctors, including a pulmonologist at CHOP and several different allergists.

I am not sure where I should head from here. The nutritionist wants me to start him on an elimination diet from wheat, dairy, sugar and strawberries. If I do this and start phasing this stuff out of his system (it is going to be a terrible battle with him, he is really fussy and strong-willed), and he starts feeling better, then I can't see putting him back on just to get a positive test result.

[Ursa Major]

Elaine, gluten is not just in wheat. It is also in rye and barley, and oats are not recommended, either. So, just eliminating wheat (and that includes ALL wheat products, whole wheat as well as white flour products like most pastas) won't help if it is really celiac disease.

If you're reluctant to wait for testing, and just want to try diet intervention, you might want to do testing for both of you from Open Original Shared Link. You don't have to be consuming gluten for their testing, as it will be accurate for up to a year after eliminating gluten from your diet. They also test for dairy and soy, and for the genes that predispose you to celiac disease or gluten intolerance.

Why does the nutritionist want to cut out strawberries, do you feel he is reacting to them? If you don't have a good reason to suspect them, I wouldn't bother at this point. Gluten, dairy and soy would be the ones I'd start with (and you should cut down on sugar). And yes, in an elimination diet, you will have to eliminate ALL dairy, including cheese and yogourt.

I am questioning the nutritionist, because they are notoriously ignorant of gluten intolerance, and often don't have a clue which foods contain gluten. You certainly don't sound like you just have a wheat intolerance, but rather like you have celiac disease.

Check out Nini's newbie kit, it is very informative. Here is the link to her site: Open Original Shared Link. Scroll down to the bottom to find the links for the newbie kit. It is essential in finding all the hidden glutens. Because if you only eliminate all the obvious sources (like bread, cookies, cakes and pasta) and ignore the hidden sources (like soy sauce, shampoo etc.), you can't heal.

[AndreaB]

I just wanted to add my welcome Elaine.

You've already gotten good advice.

I may be wrong, but I believe most doctors and allergists don't pay much attention to intolerances (IgG, delayed reaction allergy), it's the immediate reaction (IgE) that they look at.

Whether you go gluten free right now depends on what testing you want to pursue.

[GFBetsy]

About the leaky gut: There is research being conducted right now by Dr. Fasano at the University of Maryland, that says that (for those with celiac disease) eating wheat is a direct cause of a leaky gut. Google the term "zonulin" for more information.