Newbie Needs Advice (long)

[rysmom]

Hi! I am a newbie here and need some advice. I apologize in advance for this post being long... I have many questions.

I have a 3 year old who has been having stomach issues for over a year now. When we were at the doctor's (again), I brought up the possibility of him being gluten intolerant. The dr. said he didn't think so and I shouldn't worry about it since it was such a rare condition. The dr. thought my son was just lactose intolerant. The dr. told me to eliminate all dairy and milk proteins from his diet. I did this and did see a small improvement. When we were back at the doctor's, I brought up my concerns again, especially since my mom has celiac's. He dismissed my concerns again & said I am probably missing hidden dairy ingredients and that is why my son is not fully better yet. My son has not grown in ayear. He is 3 and weighs just 24 lbs and is almost 34 inches tall. He complains that his tummy hurts everyday and most days he will have up to 6 diarrhea diapers in just one day.

My gut tells me this is more than just a milk allergy. I have been reading and researching and I think he may be gluten intolerant. I started him on a gluten-free df diet. He has not complained of a tummyache in the last week and his diarrhea has almost completely disappeared. He did have one very bad day but I attribute that to my misreading labels. (I didn't realize that medicine could have gluten in it & I still do not know all the hidden names gluten may also be labeled as).

My questions for this board are:

Is there a list out there somewhere that identifies the other names gluten can be found under? How do you know that something is gluten-free for sure? Do you call the 800 numbers that are listed on packages?

Just b/c he is doing well on the gluten-free diet, should I now consider him gluten intolerant & keep him on this diet?

Does he need to have a blood test &/or biopsy to "prove" he is gluten intolerant? The tests seem so invasive, I would rather not put him through all that.

What is the difference between being a celiac and being gluten intolerant? Is it the same or different?

I keep reading about others on this site who have been tested through enterolab. Are their results always correct? If you were tested through enterolab, were you happy you went ahead and did it? Does insurance ever cover the cost?

I am considering having him tested myself through enterolab. I do not forsee his doctor understanding my side of things....

B/c of all the reading about celiac's disease I have been doing lately, I am now beginning to wonder if it is possible I could be gluten intolerant? My mom has celiac's and her symptons are tummy related and sometimes similiar to my son's. I do not have any of those same symptons. I have horrible migraines and have them just about everyday. I have different medicines I take just to function through my days. I have been to many doctors & neurologists through the years and they all say the same thing. My tests are negative... I just have migraines. I also have bad back pain but it is mainly just on my spine.

My question:

Could migraines be a sympton of a food allergy? specifically, celiac's?

If I decide to have my son tested through enterolab, should I go ahead and have myself tested as well?

TIA for all your advice. I really appreciate any help you can offer.

[Guest nini]

welcome, to answer your most important question, yes it sounds like gluten intolerance or celiac (which in my opinion is the same thing) and no you do not need to subject him to invasive testing. YOU are the parent and know your child better than anyone and positive dietary response IS a very powerful indicator. Secondly, yes your symptoms could also be gluten intolerance, keep in mind gluten intolerance is NOT a food allergy, it is an autoimmune response... (semantics, but still)

my disclaimer, I am part of the alternative health care field so I tend to lean more toward the patient knowing their own body better than the Dr. and the patient being more aware and responsible for what is going on, so I put a lot more credibility in positive dietary response than in any medical tests that are not only invasive, but run the risk of being inconclusive if they don't use the correct testing methods, find enough damage, or there isn't enough damage YET, that doesn't mean that the body isn't still reacting to gluten.

Dairy can also be an issue, especially in the begining. Eliminate both gluten and dairy for a trial period of say at least six months, then try to reintroduce dairy. (I don't recommend reintroducing gluten IF you see improvement in your symptoms gluten-free. You will have accidental glutenings as you've already seen that will prove your case)

good luck and for more info about the diet in general click on the link in my signature for my webpage, at the bottom of my webpage there is a link to the "newbie survival kit" this is a very helpful collection of files that I wish I'd had when my daughter and I first when gluten-free.

[CarlaB]

First, I was very happy with Enterolab. They can tell you if he's gluten intolerant and if he has the celiac gene. That was enough for me.

That being said, your son presents symptoms, the disease is known to affect 1:133 and the NIH has recently released a document wanting to educate doctors to that fact because previously it was thought to affect 1:4900 (the number diagnosed), and you are both genetically susceptible to it. If your ped. won't test at least IgA, Ttg, and IgG by a blood test, then I would find another doctor. Even my ob/gyn accepts my dietary response as proof and takes blood for me to see how I'm doing.

[Jodele]

B/c of all the reading about celiac's disease I have been doing lately, I am now beginning to wonder if it is possible I could be gluten intolerant? My mom has celiac's and her symptons are tummy related and sometimes similiar to my son's. I do not have any of those same symptons. I have horrible migraines and have them just about everyday. I have different medicines I take just to function through my days. I have been to many doctors & neurologists through the years and they all say the same thing. My tests are negative... I just have migraines. I also have bad back pain but it is mainly just on my spine.

My question:

Could migraines be a sympton of a food allergy? specifically, celiac's?

If I decide to have my son tested through enterolab, should I go ahead and have myself tested as well?

Hi rysmom

I just found out that my oldest dd is celiac this summer and I put the whole house gluten-free. I went through enterolab my self. My results were positive. I was having problems all my life with pain. I went though my whole life with a head ache. Let’s just say that I had a hot temper even when I was 3. I was very small as a child and my mom went to all kinds of Dr.s to see what was wrong with me. Finally they could not find any problems and they said that I was a SLOW grower and I would keep growing until till I was 25yrs. old. Yea right I stopped at 16 teen. I am 5" 1'. I graduated high school and weighed 80 lbs. I did not get real sick until after the birth of my 3rd dd and went down hill from then. I knew I had celiac disease when my dd was dx. I know what was wrong with me with out a doubt. If you think you have this problem go gluten free and don’t look back. I am slowly getting better and have a lot more energy. But I have damage now and working on what is wrong with my neck and back, I know that I have been starving myself for 33yrs. there is damage and drs. don’t know a lot about celiac disease. They can not comprehend the scope of celiac disease. They think it is just in the intestines and no were else in the body. If your mother has it you most likely have it. I know my mother has it and my sister too but none of them want to be tested yet. I can not make them but I keep them informed as much as I can. Sooner or later they are going to tell me to shut up. but I will tell them until they take the test from enterolab or Prometheus, I do not trust any other lab. My oldest dd was tested though Prometheus. I am going to test my other kids though enterolab because they don’t have to be on Gluten to be tested. I would not do the biopsy to confirm the lab test. The test is good enough for me. I put my oldest though the biopsy and did not find damage but they did not take enough samples and just right at the start of her small intestines. There could have been damage lower down. I sorry I don’t have very good faith in Dr.s any more. Well I hope you see that you are not alone in the presoot for the answer to all your problems. If you go gluten-free it takes time to feel better do not be disapointed if you don't feel better right away. I have more energy and I don’t have panic attacks, I can sleep at night and I have not felt depressed since I have gone gluten-free. But my pain in the neck and back have gone up. I think it will get better over time and I am in therapy now for it. I am not stopping there I am going to find out why I hurt. I was dx with arthritis in my knees at 12yrs old and that was when I stated having pains. All I can say is don’t take what the Drs. say they can not find anything wrong. Tell them there is something is wrong and if that dr. don't lesson go see a different dr. until a dr. take you seriously. I made the mistake to shrug and give up. I did not give up with my kids that why I found out that I have celiac disease. My daughter is my angel. It took 8yrs. with my oldest but they will not have the same problem as me because we caught it in time before to much damage is done. If you have any more questions please feel free and ask. I try to check the boards once a day.

Jodele

here is a link about migraines and celiac.

Open Original Shared Link

here is some drs that know celiac disease

https://www.celiac.com/cgi-bin/webc.cgi/st_...;sid=91hH9H0lEJ

[rysmom]

Thank you to everyone who has responded to my long post. You have all made me feel like I am not crazy and I should listen to my body. My son has now been gluten free for a week and two days and is doing better already. I am trying to go gluten free myself but it is soooo hard. I am such a junk food junkie.

However, I am more motivated than ever after reading your replies. I am starting gluten-free today, not tomorrow.

This site has been an invaluable resource for me. If anyone has anymore advice for someone just starting out, I am listening!

Thank you again!