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momandgirls

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momandgirls Enthusiast
momandgirls
Posted

I just found this board and have been snooping around and reading posts for about a week now. My daughter's 11 and has had chronic stomach aches since infancy. No doctor has ever had an explanation. Finally, we saw a pediatric GI and she's been through the wringer with tests. First, they found that she is severely lactose intolerant and, even with cutting out dairy completely, she still gets stomach aches. Her antibody test - sorry if I get the names of things wrong - was positive - I think her result was 27. She had a biopsy and it was "borderline." In other words, they didn't find flattening but she did have other things consistent with Celiac - i.e., leukocytes, etc. She then had the CeliaGene test and that was positive, also. But, because there was no flattening, the doctor doesn't seem to want to make the leap to say she definitively has Celiac. So, at this point, until I speak with the doctor next week (hopefully), there's still no plan. The anxiety around our house has been overwhelming. As silly as it sounds, she'd almost feel better if she just knew she had Celiac - at least there'd be a reason for the stomach aches. Does that make sense? So, my question for all of you experts out there is, what would you do in my situation? Many people in the family have various GI ailments though no one else has been diagnosed with Celiac because no doctor has ever suggested it. My gut feeling tells me to just go on the diet and see if she feels better. The GI nurse's feeling is that she should stay on wheat and every month or so test her antibody level. On the one hand, I know that it's difficult and there are inherent risks in going gluten free but, on the other hand, there are risks in not going gluten free if that's what you have and I really hate to see my daughter suffer. So, any advice? Thank you so much. You have no idea how much I appreciate it. PS - sorry this so long.

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Rachel--24 Collaborator
Rachel--24
Posted
My gut feeling tells me to just go on the diet and see if she feels better. .

My advice is to trust your instincts. The bloodtest was positive, the endoscopy borderline, gene test also positive..and she is symptomatic. I definately would start her on the diet if I were in your shoes. For some reason doctors are very reluctant to dx Celiac unless they see flattened villi. If you wait for that to show up your daughter will be in much worse shape than what shes in now (assuming she has Celiac).

There are no risks in putting her on the diet...its perfectly healthy and in no way will it cause her harm. If she improves from her symptoms you will have all the answers you need. You dont need a doctors permission to put her on the diet.

P.S. I moved your topic to the Parents of kids with Celiac forum so that other parents in similar situation can share their experience.

jerseyangel Proficient
jerseyangel
Posted

Hi--I agree with Rachel. If I were my child, (I have 2 sons) in this situation I would start the gluten-free diet now. Make sure she's 100% gluten-free, and give it some time. I would be willing to bet that she will be feeling much better before long. It's easy for a nurse to say--wait and keep testing--when it's not her child. The diet challenge is a valid way of diagnosing--there are others here that were diagnosed that way.

key Contributor
key
Posted

My son's test results were inconclusive, but his change in behavior and bowel movements, etc. were such a wonderful change after going gluten free, made it quite obvious that he has celiac disease. It doesn't hurt at all to do the diet and if her stomach aches go away, I am sure everyone will be thrilled. It sounds like to me she did test positive for celiac and some other docs would have called it that.

Stick around here and find out what you need to learn. Believe me, seeing your child pain free is well worth the effort.

MOnica

Guest nini
Guest nini
Posted

my daughter's results were inconclusive (well, the Dr. didn't do the correct tests) and they told me that despite a genetic predisposition (me having Celiac) that she just had IBS and I needed to feed her MORE whole wheat. :angry::angry:

that did not sit well with me. I started her on the diet and almost IMMEDIATELY had my answer. Within DAYS I had a completely different child. She was 3 at the time. She is now almost 6 and is so healthy and gluten free. If she gets the slightest amount of gluten, she reacts violently. I know my child has Celiac, I have it, and we will NEVER willingly consume anything with gluten again.

I stated on another thread in response to your post that there is no "borderline" biopsy. Either she has it or she doesn't. For some bizarre reason Dr.s are reluctant to dx the early stages of Celiac. They would rather wait until there is significant damage to the villi and the Central Nervous System and the entire immune system before they will dx Celiac. Personally I would rather stop it in it's tracks before the damage gets worse. Her bloodwork was positive, my dear, she has Celiac. Start her on the gluten free diet IMMEDIATELY and DO NOT LOOK BACK.

Nic Collaborator
Nic
Posted
I just found this board and have been snooping around and reading posts for about a week now. My daughter's 11 and has had chronic stomach aches since infancy. No doctor has ever had an explanation. Finally, we saw a pediatric GI and she's been through the wringer with tests. First, they found that she is severely lactose intolerant and, even with cutting out dairy completely, she still gets stomach aches. Her antibody test - sorry if I get the names of things wrong - was positive - I think her result was 27. She had a biopsy and it was "borderline." In other words, they didn't find flattening but she did have other things consistent with Celiac - i.e., leukocytes, etc. She then had the CeliaGene test and that was positive, also. But, because there was no flattening, the doctor doesn't seem to want to make the leap to say she definitively has Celiac. So, at this point, until I speak with the doctor next week (hopefully), there's still no plan. The anxiety around our house has been overwhelming. As silly as it sounds, she'd almost feel better if she just knew she had Celiac - at least there'd be a reason for the stomach aches. Does that make sense? So, my question for all of you experts out there is, what would you do in my situation? Many people in the family have various GI ailments though no one else has been diagnosed with Celiac because no doctor has ever suggested it. My gut feeling tells me to just go on the diet and see if she feels better. The GI nurse's feeling is that she should stay on wheat and every month or so test her antibody level. On the one hand, I know that it's difficult and there are inherent risks in going gluten free but, on the other hand, there are risks in not going gluten free if that's what you have and I really hate to see my daughter suffer. So, any advice? Thank you so much. You have no idea how much I appreciate it. PS - sorry this so long.

My son had a similar situation. A year ago he began suffering with severe constipation. The doctor began running many tests. His antibody level for gluten sensitivity was so high it was through the roof. The doctor had never seen such high levels. He felt certain it was celiac. The biopsy though came back negative because there was no flattening. My doctor, who is wonderful, did want to just let this go. He started calling around to other doctors who all agreed that they have never seen a negative biopsy with antibodies being so high. they ended up sending his biopsy to Columbia University. They are the experts in Celiac. They gave him a positive diagnosis even without the flattened villi. He has been gluten free since May and doing much better.

Electra375 Newbie
Electra375
Posted

I have to go with give the gluten-free diet a try and see how she feels, give it at least 3 months for a full effect. At least she is old enough to tell you.

Note my siggy line, my ds2 does not have a biospy, but has all the other necessary test for celiac disease plus classic symptoms. A renouned GI doc involved in research asked me if I had any doubts about it being celiac disease. I said no. He said he agreed with me although w/o the biospy he could not say for sure.

My son was already gluten-free at this point and the evidence was overwhelming that gluten-free was right for him as far as growth goes. He has gained nearly 3" in height since Sept and a few pounds. Eating is hard for him b/c he associates it w pain. We have him on and off a medication for that, which helps when we remember.

It is taking every bit of strength in me not to put my others on a gluten-free diet before testing. The information to go gluten-free from the pediatrician prior to seeing the Pedi GI is what really screwed us up w/ our ds2 dx. We were not about to put him on a high gluten diet to 'see' if he had damage after seeing such positive results going gluten-free.

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    • trents
      I think a UTI caused by Aspirin, made me a Celiac

      By trents · Posted

      Welcome to the forum, @jimmydee! Celiac disease is an autoimmune disorder, meaning the consumption of gluten triggers a response by the immune system that causes the body to attack it's own tissue. Celiac disease has a genetic base that requires some kind of trigger for the genes to be turned on. We know that there are two primary genes responsible for providing the potential to develop celiac disease and we know that about 40% of the population carries one or both of these genes. However, only about 1% of the population actually develops celiac disease. So, that tells us that something more than just having the genes is necessary in order to develop celiac disease. Something must trigger those genes to wake up and produce the active disease. It's that "something" that we are struggling to understand and that is somewhat of a mystery. But there is a growing body of evidence pointing to the culprit being a disruption of the proper balance of microorganisms in the gut. Apparently, the microorganisms that live in our intestines produce chemicals that regulate the size of the openings in the mucous lining of our small bowel. A disruption in the healthy balance of this microorganic community causes an increase in the size of the openings in the mucous lining. This in turn allows protein fragments from the food we eat that are larger than normal to invade the mucous lining where they are detected as threats by the immune system. This is what is happening with gluten for those with celiac disease. The attack in the mucous lining of the small bowel by the immune system on these incompletely broken down gluten components causes inflammation and, over time, as we continue to consume gluten, it damages the mucosal lining of the small bowel which results in the loss of efficiency of nutrient absorption. This mucosal lining is made up of millions of tiny finger like projections that create an enormous surface area for the absorption of nutrients when healthy. The "wearing down" of these millions of finger-like projections due to celiac inflammation greatly reduces the surface area and thus the ability to absorb nutrients. This in turn typically results in numerous health issues that have a nutrient deficiency base. But the answer to the question of why there seems to be an epidemic of celiac disease in recent years may not be simple. It may have many facets. First, we don't know how much of this epidemic is real and how much is apparent. That is, how much of what we perceive of as a dramatic increase in the incidence of celiac disease is simply due to greater awareness and better detection methods? Celiac disease is not new. There is evidence from ancient writings that people suffered from it back then but they did not have a name for it. And it wasn't until WW2 that gluten was identified as the cause of celiac disease. Current thinking on what is causing imbalance in gut biology has put forth a number of causes including overuse of antibiotics and pesticides, environmental toxins, fluoridation of drinking water, preoccupation with hygiene and sanitation, and the western diet. https://www.celiac.com/celiac-disease/theories-on-the-growing-prevalence-of-celiac-disease-and-gluten-sensitivity-over-the-last-half-century-video-r6716/?tab=comments#comment-25345 All this to say that I doubt your UTI or the low dose aspirin had anything to do with the onset of your celiac disease. It was probably just coincidence unless the UTI was the stress trigger that activated the celiac potential genes. The onset of celiac disease an happen at any stage of life and many people report it following a period of illness. But what is interesting about your low dose aspirin theory is that aspirin is in a class of medications known as NSAIDs (Non Steroidal Anti Inflammatory Drugs). Scientific studies have shown that long term use of NSAIDs can damage the villous lining of the small bowel in the same way as celiac disease.  The other thing I wish to point out is that unless you have actual testing done for celiac disease, you can't be sure if you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). They share many of the same symptoms, the difference being that NCGS doesn't damage the lining of the small bowel. There is no test for NCGS, celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. The antidote for both is a gluten free diet.
    • julie falco
      NEED TO READ ALL LABELS (FRONT & BACK)

      By julie falco · Posted

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    • jimmydee
      I think a UTI caused by Aspirin, made me a Celiac

      By jimmydee · Posted

      Let me start by saying that I am self- diagnosed Celiac. I didn't want to pay for tests, because I don't have health insurance and the doctor said I would HAVE to eat gluten for the tests and I am afraid it will kill me. I diagnosed myself by quitting dairy, sugar and gluten for a couple weeks and figured out the problem by process of elimination.  ANYWAYS.......here's why I blame "Aspirin low dose safety coated" for my Celiac Disease.  I started taking regular Aspirin for a couple weeks for back pain and decided to switch to low dose safety coated Aspirin because I thought a smaller dose was safer for regular use. Well about 3 days after starting low dose safety coated aspirin, I got a terrible UTI. I didn't know what to do (should have gone to doctor) I started taking cranberry pills and read Aspirin can cause UTIs, so stopped taking that. A week later, the UTI was getting worse but then my Dad gave me some probiotic pills and the next day I felt better, so I took those for a week and the UTI was gone. About a week later, I bought my family cake and pizza for a birthday party. I ate a whole bunch and there was some leftover the next day, so I ate a bunch again. Welp, that was my first Gluten attack. I was home alone and almost called an ambulance, my stomach was so full of gas I couldn't breathe, I was covered in sweat and thought I was having a heart attack.  Since quitting Gluten I haven't had the "gas attacks" or had the awful constipation that lasts 3 days. So I'm certain I'm Celiac and I absolutely blame low dose safety coated Aspirin, I think it's the time release binder that is the problem, because I was fine with regular aspirin, I was just breaking those into halves or quarters. Actually now that I think about it I may have even used the regular aspirin at other times in my life before that, just not the little low dose safety coated Aspirin, that's what I think caused it. What's weird is my Dad took the low dose safety coated Aspirin for years and years, for it's reported heart benefits, and he never got Celiac.  Anyways, I felt this was important to share, so they can find the cause of this disease, which seems to be affecting more people than ever before. At least Gluten Free Pizza exists, that's been my new staple food in my diet.         
    • knitty kitty
      Getting rid of the belly bloat

      By knitty kitty · Posted

      Welcome to the forum, @Karen Chakerian, We need more information, please.   What homeopathic remedies or medications are you taking now?  Do you still have the blood pressure and other symptoms?  What is included in your diet currently?  Dairy? Oats?  Processed gluten free foods?  Vegetarian?  Other food allergies?  Do you take vitamins?  When gluten is removed from the diet, the body stops making the anti-gluten antibodies that are usually measured in blood tests used to diagnose Celiac disease.  To measure the anti-gluten antibodies, you would have to consume 10 grams of gluten (4-6 slices of bread or equivalent) per day for a minimum of 2 weeks or longer.   A DNA test which looks for the most common genes for Celiac Disease may be a less invasive avenue to pursue.  Has your doctor checked you for nutritional deficiencies? Glad you're here!
    • knitty kitty
      Dangerously underweight, Perfect gluten free and insomnia

      By knitty kitty · Posted

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