Doc Says Not Celiac, But I Still Think It Might Be

[shelbysmom]

My 3 year old has been struggling for a long time. She had a positive ttg and positive ema a year ago after a five day hospital stay for a 15 day stomach virus. Her biopsy was negative. She was positive for the gene. She was retested for celiac in June and it came back negative. She alternates constipation/mushy poop, sometimes normal. She is doing a little bit better since we took her off lactose. She recently started complaining of tummy aches again all the time and now constantly tells me her legs hurt. She is irritable, tired all the time, pale and has the dark circles. Her hemoglobin was low before but is normal now. She has had a million blood tests,stool tests, ultrasounds, X-rays all normal. She is not a healthy child. She has reactive airway disease, and is sick all of the time. I am going to have the food intolerance panel done to see if anything comes up. My husband does not support going

Gluten free without diagnosis. He thinks I should listen to the go doc who is convinced she does not have gluten issues. Pretty sure the doc thinks I am crazy. For all you parents out there who are dealing with similar issues, please help. I would just kick all gluten out of her life, but that is pretty impossible without my husbands support. I should add that she is gaining weight again and growing. She does bloat sometimes. Also i have autoimmune hashimotos thyroiditis but her thyroid is normal. Is there other things we have missed testing for? I can't take much more of this. She is so tired, there are times that she just lays around when others around her are playing and going crazy. Help!

[Dixiebell]

Hi shelbysmom.

So you are saying she was positive on her tests? Do you have copies of them to post? There are a lot of people here that are good at reading them and maybe they can help you. Maybe you need to find another Dr. who will take you seriously. Some Dr.s will diagnose based on positive blood tests and positive response to the diet.

She recently started complaining of tummy aches again all the time and now constantly tells me her legs hurt. She is irritable, tired all the time, pale and has the dark circles

My son had these problems too and his testing was negative. Nothing else was helping and after reading about celiac and gluten intolerance and reading here, I decided he was going gluten-free and I did it with him for support and to see if it might help me too. I am proud to say that it did. I also had a lot of resistance from my husband but he has seen the light and he also met another person who has lupus and is gluten-free. I think that has helped him a lot.

Maybe he would agree to a three month gluten-free trial for her. If gluten is her problem, you should start to see some positive results in that time.

[shelbysmom]

She was ttg positive and ema positive and gene positive. The doc called it false positive because biopsy was negative. On repeat celiac panel,she was negative. I will have to hunt down the results.

[shelbysmom]

Her first panel was done in Jan 2010. Results:

Antigliadin iga < 1.2

antigliadin off 5.7

Endomysial indir iga positive

Ttg 12.0

Her next panel done in may or June was all negative.

Her genetic test was positive

Her biopsy was negative even on special slides

[Takala]

"Pretty impossible without my husband's support ?"

Your problem isn't the gluten but the unwillingness to cross the spouse without a formal diagnosis.

Majority of people with the disease never get that.

Unless you're being held hostage, go the grocery store and start.

[MacieMay]

Sorry you have to deal with not only having a sick child but a husband that is NOT supportive. I dealt with that all summer long. My husband fought me on EVERYTHING and Dr's thought I was crazy. I knew something was wrong, I just couldn't prove it or the get the attention of the right people.

To make a really really long story short. My daugther has been diagnosed with a gluten intolerance. All her testing came back negative for Celiac. She had two celiac panels, biopsy endo and colon (colon to check for hidden food allergies) and gene testing. According to gene testing she is very very very unlikely to be celiac or ever be celiac. She just turned 2. From day one of starting solids, I knew something was not right. I have two older healthy girls 8 and 6, so I am NOT a new Mom. According to what i've read on here, testing in small children is not reliable. It makes sense if you think about it. It can take a long time for someone to develop the damage to the small intestines that shows in the biopsy. Usually when someone is finally diagnosed with Celiac they are really really sick. I think what your seeing and what I was seeing is the early stages. If you can get the dr. to diagnose her with the gluten-intolerance, go with it, it is better then NO diagnosis. It took me a long time to convince my husband that something was wrong. He took no interest in doing any reading or research on Celiac/the Gluten Intolerance (go figure..he's a Registered Nurse). I made a point to point out ANY and ALL symptoms (BM,rashes, waking up in the middle of the night, distended belly etc. etc.). He is eating his words now. We have been gluten-free since Sept 1st. She is so much better!! All those symptoms... gone! And you better believe I throw it in his face every once in a while. He put me through hell. We are OK (still married) but I did have to make to clear to him that after this I will ask his opinion but not to be surprised if I don't follow it, I just can't trust his judgement anymore.

I hope this helps. Good luck! If you ever wanted to ask me any questions, just email me.

Take care

[MacieMay]

I should also add, that at the end of the summer, my daughter was finally diagnosed with Juvenile Dermatomyositis (JDM). It's an auto-immune. So, not only did she have the gluten-intolerance/lactose intolerance (yes...she had a problem with lactose too) she had the JDM. I think my husband was going through some sort of weird denial and couldn't accept that something serious might be wrong. Go with your Mommy instinct, it's almost ALWAYS right!!

[shelbysmom]

Maciemay how did you get the gluten intolerance diagnosis? I am been consulting a new doc that is a pediatrician but also a specialist in food allergy and intolerance. She wants her to get the intolerant test for 96 food intolerances, but I have read that it is not very accurate. Also, I am trying to do the best thing and follow the advice of all the doctors and respect my husband and strive to find the answer. So I understand that I can just go to the store and stop gluten, and upset the spouse, because I am not being held hostage obviously. I am just seeking other peoples opinions and fresh input as I try to fit the puzzle pieces together.

[mushroom]

Presumably, between January and May she continued to eat a full gluten diet?

[shelbysmom]

Yes she was on gluten for most of that time. I tried trials but kept stopping because of the doctors advice and my husband kept talking me out of it. I know that sounds bad, but the doc wanted her on gluten for accurate future blood work and has insisted many times over and over that gluten was not the problem and that I needed to move past it. That is when he ran all of the other tests which all came back normal. He agrees that something is wrong but says food is not it!

[mushroom]

It doesn't sound "bad" at all - it's what any reasonable parent would do in the circumstances. Did you notice any changes in her gluten-free times?

[MacieMay]

Maciemay how did you get the gluten intolerance diagnosis? I am been consulting a new doc that is a pediatrician but also a specialist in food allergy and intolerance. She wants her to get the intolerant test for 96 food intolerances, but I have read that it is not very accurate. Also, I am trying to do the best thing and follow the advice of all the doctors and respect my husband and strive to find the answer. So I understand that I can just go to the store and stop gluten, and upset the spouse, because I am not being held hostage obviously. I am just seeking other peoples opinions and fresh input as I try to fit the puzzle pieces together.

GI Dr. but I had to insist. After being sent away with no way no how does she have celiac. I called her back and told her about her positive response to the diet and that is what she based her diagnosis on. I was worried if I didn't get the diagnosis that we would run into problems while being treated for her other autoimmune disease. I was forseeing possible hospital stays. Don't under estimate the gluten-intolerance, it is serious (or for us it is). It is not the same as a food sensitivity, everyone has foods that don't agree with them. Gluten was causing or escalating an antibody reaction in her. I know that because I have copies of her lab work.

I know what you mean about following the advice of the Dr's, that was tough for me. I found myself consulting with our pedi or asking my husband "have we given this enough time". We tried lots of different to get rid of rashes. Had to keep her on the diet for biopsy, for the lab work, etc etc. Saw an allergist. It was a long summer.

I hope this helps

Feel free to email me and ask me any questions.

[JodyLee]

Hi shelbysmom.

So you are saying she was positive on her tests? Do you have copies of them to post? There are a lot of people here that are good at reading them and maybe they can help you. Maybe you need to find another Dr. who will take you seriously. Some Dr.s will diagnose based on positive blood tests and positive response to the diet.

She recently started complaining of tummy aches again all the time and now constantly tells me her legs hurt. She is irritable, tired all the time, pale and has the dark circles

My son had these problems too and his testing was negative. Nothing else was helping and after reading about celiac and gluten intolerance and reading here, I decided he was going gluten-free and I did it with him for support and to see if it might help me too. I am proud to say that it did. I also had a lot of resistance from my husband but he has seen the light and he also met another person who has lupus and is gluten-free. I think that has helped him a lot.

Maybe he would agree to a three month gluten-free trial for her. If gluten is her problem, you should start to see some positive results in that time.

Hello Dixiebell and Shelbysmom,

I have been back and forth on going gluten-wheat free for my son who is 9. His belly has been distended since he was 1 year and have been trying to find out what is wrong since, his first pediatrition said it's either worms or air???!!!

We finally took him to a G.I at Childrens, the dr. immediately took us serious. The test came back negative, however, the G.I Dr. did a biopsy and found H-pylori (sp) in his stomach and duodem (not sure if that's what it's called =/). However, he does complain about everything you two posted. He can't make it through a full shopping at warehouse grocery store we go to, (they have bench carts), he tells me how much his knees hurt and legs.

He does get the redness around his eyes and dark circles, itchy back and arms, had two teeth pulled due to falling apart in his mouth and had spacers put in and now his teeth are coming in crooked and the dentist says it is due to too much acid (I have an acid overload that when I wear a battery operated watch, the battery dies within 2-3 weeks)

So, we were gluten wheat free for a couple of months before he had the test, when came back negative, my husband said we don't need to do that anymore, so when we went back to the "normal diet" his belly stuck out again and started complaining again and his b.m's were hard again. Now I realize that it came back neg. because he wasn't eating gluten...BTW my uncle (dad's brother) has celiac.

He has been constipated since...forever. Both of us have problems with dairy-if we have a full glass of milk and cheese/yogurt...in the same day, we have to take benefiber.

I have decided to just go gluten-wheat free for my son and I, this is his life and I can't do this to him anymore. Thank you for sharing and giving me some insight on what you have already shared.

[shelbysmom]

Thanks to everyone for their input. I have decided to see an allergist and get allergy testing done. If it all comes back negative, I am going to demand to be directed to a nutritionist who can develop an elimination diet for my daughter. I think with some professional guidance, I can finally figure out which foods are causing the problems, even though the gi doc says food is not the issue, yeah right doc! Time to go with my gut and find the culprit through elimination!