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Could It Be Celiacs?
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I received a phone call today from my 13 yr old daughter's GI doc. He said that a screening for Celiac's disease came back positive. She recently had an endoscopy at another hospital with a biopsy and that was said to be fine. He told me he is going to get her slides and look at them himself with his pathologist. She has had these problems since she was born and is having the worst bout she has ever had. We can't seem to get it under control. I was told when she was 15 months that she had GERD Level 4, IBS and a hiatal hernia. That's how we have treated it for all these years. My question is this: How can you have a positive screening if the biopsy is OK? Also, she has lots of abdominal pain, constipation and reflux problems. The pain doubles her up! Does this sound like Celiac's? I thought Celiac's disease was characterized by diarrhea, she has very chronic constipation. Any ideas for a frustrated teenager and her concerned parents?

Thanks

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Some people have absolutely NO symptoms at all. Some people have a ton of symptoms. That is what makes Celiac Disease hard to diagnose without theblood and scope tests. Some people even have false tests, yet still have Celiac and great results on the diet. Some people have diarrhea and others have constipation, and even others have alternating bouts of both!! There are SOOOO many symptoms.

The best idea would be to talk to the doctor and try the gluten free diet and see how she is feeling on it.

Here is the symptom list that can be found here on celiac.com :

What are the symptoms of celiac disease?

There is no typical celiac. Individuals range from having no symptoms (asymptomatic or "latent" forms of the disease) to extreme cases where patients present to their physicians with gas, bloating, diarrhea, and weight loss due to malabsorption.

In between these two extremes lie a wide variety of symptoms that include:

Diarrhea

Constipation

Steatorrhea (fatty stools that float rather than sink)

Abdominal pain

Excessive gas

Any problem associated with vitamin deficiencies

Iron deficiency (anemia)

Chronic fatigue

Weakness

Weight loss

Bone pain

Easily fractured bones

Abnormal or impaired skin sensation (paresthesia),

Including burning, prickling, itching or tingling

Edema

Headaches*

Peripheral Neuropathy* (tingling in fingers and toes)

Individuals have reported such varied symptoms as:

White flecks on the fingernails

Fuzzy-mindedness after gluten ingestion

Burning sensations in the throat

In children, the symptoms may include:

Failure to thrive

Paleness

Querulousness, irritability

Inability to concentrate

Wasted buttocks

Pot belly with or without painful bloating

Pale, malodorous, bulky stools

Requent, foamy diarrhea

In addition to all of these, dermatitis herpetiformis, a disease in which severe rashes appear (often on the head, elbows, knees and buttocks) is related to celiac disease.

Reactions to ingestion of gluten can be immediate, or delayed for weeks or even months.

The amazing thing about celiac disease is that no two individuals who have it seem to have the same set of symptoms or reactions. A person might have several of the symptoms listed above, a few of them, one, or none. There are even cases in which obesity turned out to be a symptom of celiac disease.

Best Wishes and Good Luck, you have come to a great place to begin learning!!

-Jessica :rolleyes:

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twinmom0_0,

Jessica is right, and that article she posted for you is only a partial list of the many and varied symptoms of Celiac Disease. Many people do have diarrhea, but just as many have constipation, and some have a combination of both(like me). I am sorry that your daughter has had to suffer so long, you should certainly take her back for more testing, but keep in mind that the final test should be the gluten free diet.

You asked how she can have positive blood test, but negative biopsy, and that has a very simple answer. When gluten in damaging the intestines the damage is not uniform, but rather it is patchy. When the doctor goes in with the scope, he takes a few samples from different places, but there is always the chance that he will miss all of the damaged spots and the test will come back negative. A very skilled labratory will be able to notice the microscopic changes in the lining of the intestine which indicates the early stages of damage, but not very many labs are skilled at this. Also the damage to the villi might be minimal and some labs, and doctors won't say it is positive until the villi are completely flat, which in my opinion is rediculous. By the time the villi are completely flat you are risking your health (or your daughters) by increasing her chances of developing other autoimmune diseases, intesintal cancer, and the posibility that she may not heal completely on a gluten free diet, but will suffer the rest of her life. It isn't worth that. Listen to your new doctor, he sounds like he knows what he is doing.

God bless, and let us know how it turns out. Oh, and yes, your daughter symptoms DO sound like they could be Celiac Disease.

Mariann

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twinmom

Before I found out that I had Celiac, I had terrible constipation!! I had been hospitalized for it the whole nine yards!! Only months before my diagnosis I started getting diarrhea!! Don't think that severe constipation can't be a symptom it is!!!!

:unsure:

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My three year old daughter has always had a very bloated stomach, horrible stools and is starting to look anemic. I mentioned it to her dr. a couple years ago but he said she was just lactose intolerant. I put her on soy milk and limited her cheese but her stomach is as bloated as every. She really has not had a solid stool since birth. I am afraid it could be celiacs. Am I just being a nervous mom??

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No I don't think you are a nervous mom, you have every right to think she could possibly have Celiac. My daughter suffered for years with abdominal pain I let the doctors tell me she hurt because she was constipated because she does not eat veggies, the doctor actually looked at her and told her to eat fruit every day (ARG)!!! <_<

You have several options at this point, You could request her doc to order bloodwork and possibly an endoscopy with biopsy, put her on a gluten-free diet for a couple of weeks to see if she improves or just do what I did and order a stool panel test from www.enterolab.com

I hope you find answers soon for your little one.

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schubach

I agree with jhmom, I've heard every reason in the book on why I was sick until I was diagnosed. You are not a nervous mom, you are a vigilent mom for reading up on possible diagnosis for your little one. I say good job and good luck!!!

:D

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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