New To Gf, Does This Sound Like Gi Or Celiac?

[MiniVanMama]

Hi, My name is Jess, and I suspect my 22 dd has some form of gluten intolerance. I would love some feedback if you agree with my suspicions (or if you think I am wrong! LOL!)

She was breastfed till 18 months, so her poop was always softish. I assumed it was because she was breastfeeding. After weaning, I noted several times that her belly looked distended, she is pretty skinny and her tummy looked huge. Then about a month ago it got really bad in the diaper dept. All of her stools have been messy runny things. Usually light sand or green colored, or dark dark brown. Very mucousy, cottage cheesy even. AND STINKY!! An odor I have never experianced in a child before. They burned her bum instantly. I have spent the last month slathering her raw bum with diaper cream.

Dr said that allergy tests were not accurate at this age, and to do a food journal and see if I could find out what was. It didn't take much to see that after breads and crackers she was having a reaction of a bad poop. I felt inspired to look up wheat/gluten intolerance, and immeaditly that day took her off gluten to the best of my ability and knowlege at that point. That evening, she had her first solid poop in months and months. the next day I served her what I thought would be safe, beef meatballs I prepared with no added ingrediants, veggies and ketchup. Right after lunch she had a tummy ache and a very very bad diaper. It had to be the ketchup! It listed "vineger and natural flavors" which I have since found can have gluten. Now, day 3, I have a happy girl, who has had two very well formed poops today, instead of 6 diarhea diapers a day.

I am thinking at this point, and her age there is no point in trying for a medical diagnosis. I am thinking of just going gluten-free altogether and seeing how she does. It seems safe. Any thoughts?

Thanks so much! I have really needed other parents to talk to. I really look forward to getting to know you all!

Jess

[KaitiUSA]

It def. sounds like a good plan to get her off of gluten. If she is doing better go with that. What your body tells you is better then what any doctor can tell you. good luck with everything

[ashlee's mom]

Jess,

What brand of ketchup was it? Heinz 57 is gluten-free, so I just thought I would mention that.

Otherwise, it seems like your little girl could very likely have Celiacs. As for whether or not to deal with the testing, it just depends on a lot of different things. First of all, as far as the testing, I was worried about the biopsy, but Ashlee's GI told me they do this type of thing safely on newborn babies, and that helped me. You could also have a blood test done, which other than holding her down wouldn't be that bad! The advantages to having her tested could be other adults in her life taking it more seriously. Some people who have a medical diagnosis still have problems with family and friends believing them. You need to know when your daughter is at Grandmas she is still safe! It might also help later when she is in school if the school gives you any difficulty. If you don't think this would be a problem, the other thing to consider is that I have heard as kids hit puberty, symptoms can go away. (Of course, damage is still being done). If your daughter has a firm diagnosis it is harder to say "See, I'm fine". If you think you will ever want a medical diagnosis, now is the time to have it done. Otherwise you will have a child who you are fairly certain has Celiac Disease who then has to eat gluten for quite some time in order to test.

It really is a personal decision. If you see what is wrong and can fix it with diet, that might just be the way to go, it just really depends. You could always order a test through Enterolab as well, and then you could have the best of both worlds!

Best of luck to you, and I am glad you hear your daughter is feeling better!

Michelle

[CMWeaver]

Hi there,

Of course the most alarming part of your post is that her condition significantly improves while not ingesting gluten.

My daughters were 4 when they were diagnosed so by then, we could have skin allergy testing done on them to figure out if it was a food allergy contributing to the symptoms. Nothing came up positive but there are a few bloodtests that can be run. If they come back positive or with elevated numbers, you might have a preliminary diagnoses. There are many people on this board that have had positive bloodwork and went gluten free based just on that. I think I even read some signatures of people who went gluten free and noticed an improvement in symptoms so they continued to be gluten free without any further medical testing.

For us, the decision to at least do the bloodwork (I think they just did IgA and IgG)was really for confirmation since they are twins and celiac tends to be inherited. However, you know best what you feel most comfortable doing medically.

The food diary that you are keeping sounds like it is coming in handy. I'd keep doing that.....it's good documentation for a ped or GI doctor if necessary.

Christine

[Boojca]

Jess,

The only problem with not getting an "official" diagnosis now is that when she goes to school, she will not be covered by 504 which entitles her to accomodations making her school life "gluten-free" or at least close to it. For instance, in kindergarten if they use play-doh they will have to make an accomodation for her (a gluten-free version or use something else instead of play dough altogether) if she has the official diagnosis, but if she doesn't they don't have to do anything. So, you really are better off putting her back on gluten and getting the official test. However, if you can't do that than gluten-free is the way to go. Just so you know, though, if she's gluten-free and they test she'll come back negative so she must be ingesting gluten.

My son was diagnosed last June at age 2 1/2, and he had the same symptoms as your daughter (poops that would eat his butt, distended belly...)

Bridget

[MiniVanMama]

Well, my ped said he didn't want to do any testing, just to keep her on the gluten-free if that was working and go from there. Now I am second guessing myself. We actually see a different doctor most of the time. Should I ask for the bloodwork? who do I ask, my family practice dr, or do I need to go to someone more specialized?

Thanks!

Jess

[CMWeaver]

If you plan doesn't require you to have a referral, you could just take her to a GI doc would know the most about the testing and entire the process of diagnoses. Shoot, even if you do need a referral, you can tell the ped that you would feel more comfortable taking this further in efforts to help your daughter now....rather than trying to backtrack a year from now or so when she enters school. To have her doing well....and then put her back on gluten for the test would be super hard. Especially since your system because so much more sensitized to gluten after it has been taken out of the diet for a while.

On another note, if she happens to turn up with it, the first generation family will need to be tested and based on the amount of medical expenses and special cost of foods that are used....those are tax deductible if you exceed a certain amount.

Hopefully, the upcoming week will help get you some answers.

Christine

[momof2]

Jess,

I was there about 6 months ago with my 14 month old! I also hesitated the biopsy, and almost left the hospital during her appt. It was a very tough thing to do, but I am so glad we did it! We have proof that this is what she has. My GI Dr. is treating a 5 year old now, that his parents took him off gluten, and now they find out he never had Celiac Disease...it was something else. So, his parents have spent the last 4 years feeding him certain foods, when they didn't have to. Also, I agree with the post about the teenage years being hard, because some kids don't have symptoms during that phase in their life, but if you have a definite diagnoses from a biopsy, the teen might be more willing to comply.

I also did what you did, took her off gluten immediately, and the GI Dr. told me to put her back on gluten. I hated the thought of putting that stuff back in her system, when I saw what it would do to her. Anyways, the GI Dr. rushed an appt for the biopsy, so we wouldn't have to put her back on it. Her intestines didn't have enough time to heal, so the biopsy came back positive for Celiac.

Good Luck in whatever route you take!