Now They Want To Test My 11 Year Old Daughter For Chron's

[bizzymomof5]

I posted a week ago that her test for celiac came back negative. Total IGA was elevated but the t-Tg was negative.

She is slightly anemic. They refered us to a pediatric doctor yesterday. Her first thought was celiac's until she saw our previous blood work from the week before. She tested her stool for blood which immediately showed positive. That's when my daughter informed me that she sees blood almost every time she goes to the bathroom. I thought it had only happened the one time that she told me about it. Now, we are doing stool samples, more blood work, and they are referring us to a pediatric gastro doctor. The doctor we saw yesterday is concerned that it is Chron's disease.

Does anyone here have experience with this? She said the gastro doctor will want to do a colonoscopy, etc. I was so not wanting that to happen. :-(

Is it possible she could still have celiac even with the negative results or am I just grasping at straws here. I would much rather her deal with celiac than chron's.

Thank you,

[ShayFL]

See if you can get an endoscopy (with biopsies) as well as the colonoscopy. They might not since the blood was NEG. Likely they would not test her for Celiac genes either because of this.

But you can also use Enterolab. If you can afford it, get the gene testing done as well.

[Blessings]

My son, dtr, and I all have crohns. Take the testing one day at a time. You can deal with it daily and my son has been doing great for 5 years. Through college. Many disapointments but many great accomplishments. Amanda just had surgery in March and it is one day at a time. She isdoing well and doesn't want to see a dr ever again. They have had more scopes and test than most seniors. I will pray that it is not crohns. God will give you strength for each new day. You guys will get through this time.

God bless,

Vicky

[nora-n]

I have seen some abstracts in pubmed that say that some can have crohns or colitis with an an element of celiac (meaning that the patients got better off gluten) so it is possible to have both kind of. I read a posting by a woman who had had positive bood tests for celiac but negative biosy, and a diagnosis of crohns, who never got weee on gluten-free diet, or on crohns treatment. She started thinking and she thinks she might have both and should have treatment for both.....(and, there is always the SCD diet which by nature is gluten-free but also comlex starch and sugar free)

nora

[bizzymomof5]

Nora,

What is the SCD diet?

Thanks!

I have seen some abstracts in pubmed that say that some can have crohns or colitis with an an element of celiac (meaning that the patients got better off gluten) so it is possible to have both kind of. I read a posting by a woman who had had positive bood tests for celiac but negative biosy, and a diagnosis of crohns, who never got weee on gluten-free diet, or on crohns treatment. She started thinking and she thinks she might have both and should have treatment for both.....(and, there is always the SCD diet which by nature is gluten-free but also comlex starch and sugar free)

nora

[ShayFL]

go to www.pecanbread.com

[mosaicmom]

New here too and your story is our story- my daughter s 17, and they believe it's Crohn's ALTHOUGH before being told to stay on gluten til the upper and lower scopes, I did put her immediately on a gluten free diet for 10 days and not only did we (and WE is a huge statement for a kid who fights me on every thought I have) see a marked improvement in the pain associated with bowel movements, but she also had some mental clearing as well... within a week.

Unfortunately, we couldn't do it longer right now, still waiting so I can't tell you more.

My daughter has what they call "hallmark" Crohn's signs, and during pre-op, dh did not confirm (just assumed) with anyone that Celiacs would be tested for. Our whole family is going to the one later this month so we can confirm prior to it being started.

Blood work came back negative, except for the antigen panel where Candida was shot under her arm. Slightly elevated white blood cells. Nothing more. Nothing eludes to the problems they found on the barium video-small bowel follow through.

She has many of the symptoms others here describe, including the rash, though not consistent throughout her life.

I'm going to follow your story.

[bizzymomof5]

The gastrp doctor's office called and they want her to come in on Tuesday of next week. I thought it would be several weeks before we could be seen there. The pediatrician told me that there is usually a wait to get in to see these particular gastro doctors. Hmmm...

I'll let you know what we find out.

Hope all goes well with you and your family.

New here too and your story is our story- my daughter s 17, and they believe it's Crohn's ALTHOUGH before being told to stay on gluten til the upper and lower scopes, I did put her immediately on a gluten free diet for 10 days and not only did we (and WE is a huge statement for a kid who fights me on every thought I have) see a marked improvement in the pain associated with bowel movements, but she also had some mental clearing as well... within a week.

Unfortunately, we couldn't do it longer right now, still waiting so I can't tell you more.

My daughter has what they call "hallmark" Crohn's signs, and during pre-op, dh did not confirm (just assumed) with anyone that Celiacs would be tested for. Our whole family is going to the one later this month so we can confirm prior to it being started.

Blood work came back negative, except for the antigen panel where Candida was shot under her arm. Slightly elevated white blood cells. Nothing more. Nothing eludes to the problems they found on the barium video-small bowel follow through.

She has many of the symptoms others here describe, including the rash, though not consistent throughout her life.

I'm going to follow your story.

[ravenwoodglass]

The gastrp doctor's office called and they want her to come in on Tuesday of next week. I thought it would be several weeks before we could be seen there. The pediatrician told me that there is usually a wait to get in to see these particular gastro doctors. Hmmm...

I'll let you know what we find out.

Hope all goes well with you and your family.

I am glad they are getting her in quickly. Do INSIST that they do an endo and biopsies also. I would be tempted to google and print out information on the freqency of false negatives for blood testing and bring it with me just in case the doctor balks. Up to 30% of us have false negatives so it is not out of the realm of possibility.

After the testing then do get her back on the diet for a good 6 months or so. No matter what the results. That is the true test of whether it is needed and there is a good chance it will be helpful for her.

[mosaicmom]

I'm definitely going to come back and post the results of the Celiac panel they ran on my daughter a month ago when I can get my hands on the test results (I didn't know they ran one, came across the paperwork, and was told it came back negative- despite not having known they did one in the first place)

But to the OP (original poster) and to anyone else...

Nothing showed on upper xray (video) with barium, but you cannot deny a couple of key points (rather dr's can't). Gas, bloating, burping, GERD, spitting up (not green bile, whatever is yellow). The rash on her skin is apparent though she never gets large blisters. They tend to be flatter and scab fairly quickly, in small patches, almost not noticeable.

Lower area, many more problems, but I'm wondering if it's due to straining from constipation.

Has your daughter had a thrombosed hemorrhoid, or had bleeding consistently with bowel movements? Anyone else? Fissures (anal), can they occur with Celiacs due to the straining involved?

Anyone hear of the term "nodules" and Crohn's and believe they can occur in Celiacs as well? Remember, we haven't had the scope yet, I don't know the blood test results yet, we just have the barium and small bowel follow through to go on where larger than expected "nodules" showed up.

[bizzymomof5]

The doc called today with my daughters blood chemistry results. She said overall they looked pretty good. She said that her sugar was a little high-110. The lab says the range is up to 100. The doctor's office considers 110 to be the high. So.....she feels like it's probably okay but she will have them do a finger poke on the morning of her appt with the gastro doctor. It will be a fasting blood sugar. The other thing that she said was that there is one thing that shows up on that test that is considered non-specific but it tells them if there is inflammation. The range is 0-20 and hers was 49. She said that makes her lean more towards something like Chron's or inflammatory bowel disease or something like that. I still have not been able to get a stool sample from her. They still need to test that. Doctor is almost certain that the gastro doctor will do a colonoscopy and a scope through the mouth. :-(

Well, that's all I have for now.

At this point I'm actually hoping for Celiac, but it doesn't seem like it's going that way.

[bizzymomof5]

Turns out it is Crohn's after all. They did do biopsies to check for Celiac as well and other things. Won't have those results for another week.

Not sure what to do now. they want to put her on meds for the inflammation. Fortunately, not steroid type drugs at this point. I would like to try diet changes first but not sure the doctor would go for that.

Thanks, everyone, for your help.

[ShayFL]

I Googled "Crohn's" + "Diet" and the first thing I got was information on the SCD diet for IBS and Crhon's. If it were me or mine, this is what I would try.

I would like to try diet changes first but not sure the doctor would go for that.

If I had felt this way when they found pre-cancerous cells on my cervix, I wouldnt have a cervix anymore. They wanted to cut it off. Mutilate me and cause me future problems. I wanted to try a natural approach first. Turns out it was the right choice for me. 6 years later and about 12 PAP's that say I am all clear.......Doctor's know some things....but DO NOT know everything. A mother's instinct has value. Listen to it.

Any and all drugs do have side effects and they do not "cure" the problem. The right diet has a much better chance of healing her IMO.

[ravenwoodglass]

Turns out it is Crohn's after all. They did do biopsies to check for Celiac as well and other things. Won't have those results for another week.

Not sure what to do now. they want to put her on meds for the inflammation. Fortunately, not steroid type drugs at this point. I would like to try diet changes first but not sure the doctor would go for that.

Thanks, everyone, for your help.

I would encourage the diet changes and then if that doesn't help within a week or two start the meds. You may find that the dietary changes produce such a profound reaction that the need for meds is decreased greatly. There is a chance that over the next week with the exclusion of gluten, dairy and other items she may be intoelrant to that you may see a significant change before the next appointment. You need to go with your 'gut' feelings on this one. I hope she is feeling better soon.

[nora-n]

Yes, I have found lost of reports all over the internet about the scd diet helping a lot, and many are in remission.

There is a scd thread in the other food intolerance folder here too.

In the yahoo groups for LDN there are several people who got remission on LDN (Low dose naltroxone) and there have been clinical trials recently.

nora

[bizzymomof5]

Thank you everyone. I am going to the bookstore today to see if I can get the book "Breaking the Vicious Cycle" and also "The Specific Charbohydrate Diet" (i forget the actual title)

Thank you again for all the help and encouragement.

Tracy