Jump to content
  • Sign Up

Rate this topic

Recommended Posts

Hi, I am brand new here but I have been lurking for about a week. I need some support. I can't stand the waiting anymore and neither can my daughter. 6.5 years ago, at age 6, she had a seizure that was based in the occipital lobe. She had two back to back and then didn't have another for 4 years. However, during that 4 years, she has had countless digestive issues which made her a bit food phobic. She has constipation, nausea, some vomiting (rare), gas, painful cramping and becomes food adverse. Fast forward to the present. She is now very short in stature and her pediatrician became concerned about her lack of growth after an ER visit for suspected appendicitis.

(During the last two years the seizures became more frequent but still normal EEG between them which is unusual. It stumped her neuro but he put her on meds anyway.)

We had blood work run via the pediatrician and her Celiac panel came back negative although her IGA was below even normal levels. Her TTG IGA was negative and so was the IGG. I will say that she hadn't eaten in three days due to this bad episode of suspected appendicitis. Maybe that effected the result?

One result that was alarming is that her IGF-1 (Growth hormone related) was below normal levels for her age. So an appointment was made with a GI and an Endocrinologist (late December).

The GI stated that because the celiac panel was negative and we had no family history, she doubted celiac. However, I asked her if the seizures could be related since we could never find a cause (she has normal EEGs) and she said only if it is occipital. BINGO. This resulted in her willingness to run a gene test.

Children's lost her blood so we had to do a recollect. ARGH.

So while we sit here and wait for the gene results, I called my sister-in-law to find out why she suddenly went gluten-free a year ago. She went to her doc with complaints of tiredness, GERD and IBS. They did a celiac panel and it was "slightly positive". They did no further testing but had her start GFD. How would they know that without a gene test or biopsy? I think her GP just said "raised antibodies" so let's go gluten free. She isn't very stringent with the diet because they told her that she wasn't positive for celiacs but she had a gluten sensitivity. So she doesn't ask about sauces when she goes out to eat but avoids bread and pastas. Even with this her GERD has been much better but not resolved and her IBS has mostly resolved. If she eats a bit of bread she is nauseated for several days.

Anyway, we had a long discussion and we now are wondering if she has Celiac AND if their father had it. The entire family is plagued with GERD and IBS. Her father died of esophogeal (sp) cancer and had severe GERD. I wonder if my husband also has it but he is in severe denial right now and maybe he is right. If my daughter comes back gene negative, I will need to figure out what is going on.

I was told that the gene results will take one week and the GI was so convinced that my daughter has GERD and not Celiac that she scheduled our next appt for February and said we could discuss the gene results then. Are you kidding me???? My daughter is in daily pain and I want answers now, not in 2.5 months. She gave her a prescription for Prilosec at a very high dose that the insurance company won't cover so I can't start her on that and I also am wondering if I should just wait.

If we get a gene positive result, I am going to beg for a biopsy immediately and hopefully she will grant that.

In the meantime here are my daughters symptoms and I would love any thoughts:

Irritability

Anxiety

Asthma

constipation

stomach pains (daily)

nausea

food aversions

seizures

excema

Low IGF-1 and short stature (3rd percentile)

delayed puberty

low weight (3rd percentile)

Secondary family member diagnosed with gluten sensitivity

joint pain

fatigue

muscle pain

For a 12 year old girl, she is very sedentary and lacks energy. She is frequently ill and very moody.

Honestly, I know this sounds horrible but I hope she has it. I just need some answers.

Any thoughts?

Thanks!

Share this post


Link to post
Share on other sites

your poor DD ! sounds like it cld be celiac or gluten intolerance. If I were you I would start her on a gluten-free diet immediately to see if you get any improvement. My DD is 13 & last Dec @ her annual physical her growth dropped off the charts. She had been at the 10-25th pctile all her life. She didn't have any symptoms except the stunted growth and her hir seemed to stop growing too. She had stomach aches but they just seem run of the mill.

Anyway, she was 4'7 & 71 lbs We went to endocrinologist who ran 11 different blood tests 3 of which were a celiac panel & BINGO high antibodies. She is also low in vit D. Started her on a gluten-free diet in May & she grew nearly 3 inches over the summer & she slept like 13-14 hrs a day everyday. Her foot went from a size 4 to a 6 in the blink of an eye. And puberty is in full force.She is now 4"10 * weighs 78 lbs.

Have you had her Vit D & iron levels chkd? These may be low as malabsorption is a huge reason for the stunted growth. Has she had an age bone scan? the endoscopy is a controversial issue Some ppl believe its worth it some don't I am one of those who don't. You will see many threads discussing pros & cons.

It may take a while for DD to feel better or she may feel better immediately. Just be vigilent to make sure food is gluten-free & watch out for cross contamination Tons of threads on that too.

Best of Luck to your girl!

Share this post


Link to post
Share on other sites

If her total serum IgA was below normal, than any IgA testing would be invalid because she does not make normal quantities of IgA antibodies. They should run IgG versions of all the tests. I know you said her tTG IgG was negative, but did they run the DGP or the EMA in IgG versions? Or maybe she just did the tTG? Many doctors do not order the full panel. If those other two were not run, I would request them. The DGP is very specific for celiac. And one negative test does not mean that all others will be negative.

Share this post


Link to post
Share on other sites

OMG. Where do I start?

In my humble opinion, your daughter exhibits multiple symptoms of celiac disease.

Certainly you have read the list of symptoms and already know this and your mother's instincts are strong. Waiting until FEBRUARY--for what?? So she can remain ill??? This doctor is of no use to you. Time for a celiac-savvy GI doctor. A 12- year- old on reflux drugs? That's symptom-treating, not healing. And very often, a celiac ravaged gut has a deficiency of stomach acid, not too much. I took those damn things for 12 years and they did nothing! I no longer have the "GERD" and "IBS" since going gluten-free and they told me I would have to "live with it". My GI tract burned from my mouth to you know where--all from gluten and celiac for YEARS. I was in agony and then, developed dozens of horrid symptoms.

IBS is a collection of symptoms--it's a "syndrome" not a diagnosis--and in many cases, curable. It's a lazy diagnosis rather than helping a patient figure out what is CAUSING the bowel to be irritable.

People test Negative for celiac disease frequently. I did, yet I am a celiac nonetheless. How does this happen? One reason is IgA deficiency.

PLEASE! Tell your SIL that "mildly Celiac" is a ridiculous diagnosis. :blink: Who on earth told her that?? Raised antibodies indicates an autoimmune attack. Anyone with celiac should never, ever cheat and consume gluten. She is causing damage to her intestines every time she does so.

Have her read about celiac disease before she continues to make herself ill and susceptible to other autoimmune diseases.

As for your daughter, what the hell does the pediatrician and this GI THINK is the reason for all these symptoms??? :blink: No kiddo feels this poorly WITHOUT reason. GERD? Really? that doesn't cause short stature, eczema and delayed puberty!!!!!

From the Celiac Disease Foundation:

"A patient with positive antibody tests and a patient with selective IgA deficiency are strongly advised to consult with their physician regarding a small bowel biopsy (which is performed endoscopically). A positive small bowel biopsy is required to confirm the diagnosis and assess the degree of damage to the villi in the intestinal lining. Antibody test results can only suggest the presence of Celiac Disease but cannot confirm it. When antibody results and biopsy are inconclusive, or when the patient is on a gluten-free diet, genetic testing of the HLA (human leukocyte antigen) DQ2/DQ8 genes may be helpful. The specific genes DQ2 and/or DQ8 are considered necessary for Celiac Disease to develop. Since one-third of the population also has these genes, the presence of DQ2 or DQ8 does not imply that the person will necessarily develop celiac disease, rather, that they have a genetic predisposition to celiac disease."

I should add: There ARE people with genes OTHER THAN the DQ2 and DQ8 that have Celiac Disease--right on this forum. So even that may not help "rule it out".

And a positive celiac panel is good enough for many GI docs now to DX celiac, although many still prefer to have the biopsy as confirmation.

I sincerely hope you get someone to treat your daughter appropriately. She needs help now--not in February!!!! And if your test results are available in a week, ask for someone to CALL you with the results and get copies of them!!!

If all the tests are negative, you do not need anyone's permission to try a gluten free diet. In a few weeks, if she feels better, you'll know. She may even feel better within days.

Best wishes and good luck.

Share this post


Link to post
Share on other sites

Your daughter sounds like she is miserable and she deserves to feel well. IMHO her symptoms alone, despite the negative celiac testing, warrents a upper GI scope/biopsy. It is possible to be positive on biopsy and negative on blood work. Once you exhaust all the testing you are going to do, try her gluten free for a good three months. Gluten very much can affect you neurologically as much as GI.

I have two sons. Both have had various issues since birth. They did have periods of time that the symptoms were not apparent, but eventually they changed and came back. Both were blood tested after I was diagnosed. Neither seemed to have any issues at that time and their tests were negative.

FF two years and my youngest son started having daily stomach aches of varring degrees, emotional/mood issues, temper tantrums, an abnormal obcessive behavior over his shoes and fat in stool. I had him tested for allergies and retested for celiac. His IgA tTG was positive. I did not have him undergo a scope. Hubby and I regretted not getting it so after 4.5 months gluten free we started a gluten challenge. He only was able to make it three days. We called it quits and consider that diagnostic and him diagnosed. I am considering having him gene tested to see if I can get his "official" diagnosis. Gluten free has been a miracle for him. His emotional/moodiness, tempertantrums, his obcession over his shoes and belly aches are all gone! He has grown 4" in this past year since gluten free and no longer underweight.

Oldest son had been blood tested 3-4 times now, and everytime negative. I contemplated trialing him gluten free for 2 years and couldn't commit him to it with negative tests. Earlier this year he started complaing of daily stomach pain, gas/boating, nausea and slow/stalled growth. He has also has had a constipation issue since he was born(on lots of meds when he was a toddler). I finally took him to a GI specialist in the hopes she would scope him. Honestly I didn't think she would, but she didn't hesitate to schedule him. His scope/biopsy was negative also. Believe it or not this, and his 4 year younger brother's growth explosion(he wasn't that much smaller than his brother at this point), is what helped me make the decision to put him on a gluten free trial. Needless to say it has been an eye opener for me. He has already gained 6 pounds in the last three months and is starting to grow in height. No more belly aches and he is as regular as clock work now.

Share this post


Link to post
Share on other sites

First of all thank you all for your replies. I was beginning to think that I am crazy and my daughter a hypochondriac. I am not sure what sure what I will feel if the test for genotyping is negative. I swear we could be one of those people that are gene negative but still have celiac. That is our MO, lol.

Thank you for feeling my pain and making me feel better. I really needed this support to get through this week.

I do feel so bad for my DD. She is suffering and she is anxious about this result. She needs to feel validated. Do you know what I mean?

The interesting thing is that the GI is a Celiac expert. The top in our city. I liked her but she was truly at odds with my daughters issues. They were too numerous and she counted her blood workup as negative. Even my primary pediatrician said that the celiac panel was void due to low IGA. I should have mentioned that.

Well, hopefully she comes up gene positive. It would be a relief to be honest.

Thanks All.

Kristi

Share this post


Link to post
Share on other sites

First of all thank you all for your replies. I was beginning to think that I am crazy and my daughter a hypochondriac.

She is suffering and she is anxious about this result. She needs to feel validated. Do you know what I mean?

The interesting thing is that the GI is a Celiac expert. The top in our city. I liked her but she was truly at odds with my daughters issues. They were too numerous .

Well, hopefully she comes up gene positive. It would be a relief to be honest.

First, you are not crazy and your daughter would have no reason to "make all this up". Besides, you cannot "fake" short stature and eczema. :rolleyes:

Secondly, OF COURSE we know about wanting to feel validated. I went YEARS trying to find answers to DOZENS of inexplicable painful symptoms. This thing tried to kill me. I KNEW in my heart that it was SOMETHING. Not any of the BS diagnoses I heard--IBS, Fibro, anxiety/grief (my dad had just died)or worse, the famous "menopause". Really, doc? that's all you got? :rolleyes: They tried to give me xanax, antidepressants. I don't want that crap, I want my life back.

Thirdly, TOO NUMEROUS??? :blink: Any "celiac expert" should know that malabsorption/celiac can cause hundreds of symptoms--OR NONE AT ALL. It's called silent celiac!! Gluten intolerance causes-- or is linked to-- many skin disorders, neurological symptoms, kidney and liver disease, musculoskeletal disorders, and several other autoimmune diseases, even lymphoma. Not just gastrointestinal issues.

Take her some CURRENT literature, for pete's sake. This doctor is woefully ignorant. :angry:

And finally, yes Mom, we know what you mean! I was HAPPY it was celiac. It was an answer to why I had been sick and in crippling burning nerve and joint pain and out of my head spacey and lost for so long. Why I had multiple miscarriages, migraines, lost my hair!, had fatigue and anemia, raging insomnia,etc.

My NEW GI doctor (because I left the one who misDXed me for 12 years!) said "I have never seen it manifest the way it did in you. It's a crime no one saw it. Good thing you figured it out yourself. You saved your own life!" He also said : I have a guy with total villous atrophy and his blood work was NEG and his genetic test showed he was not a DQ2 or DQ8." So much for the "standard diagnostic" tools. :rolleyes:

I was glad there was a treatment --a gluten free diet---and an end to my pain and suffering. I lost YEARS of my life to this thing and I am still in PT rehab to regain the lost muscle mass I suffered. I am in pain 24/7 with bone pain. It even affected my teeth. :(

There are hundreds of us on here with similar stories of doctors who thought "it's not celiac". They were wrong.

I do not want this for your daughter!! Time to end the madness. No matter the test results, please try her on a gluten free diet. It cannot hurt, she may feel better and then, you will know. If you need help with menu ideas, PLEASE ask me or any other member on here. I have a month's menu and shopping list ideas I made up for my family members. I will be happy to send it to you.

Please let us know what happens. We care!

Share this post


Link to post
Share on other sites

@ Maximoo, my daughter is 4 feet 7 and 70 lbs. She has been 70 lbs for over a year. I read your reply to my DD and she just smiled and said "wow, maybe it will be a good thing if I am celiac because I will grow and be like my friends". She is very stressed out about giving up certain food items but i told her that she and I will bake together and learn what the heck we are doing together. I have suffered IBS and constipation all of my life and I have unexplained high blood pressure (I am not overweight and in decent shape). I also had 5 miscarriages and adult onset asthma. Wow, writing all my symptoms is setting off alarm bells, lol. So if she has celiac, I will get tested too but regardless, I will go gluten free with her for at least the first month.

@ Mushroom, I completely forgot about that low IgA invalidating the test. Thank you for the reminder. Her total IgA was 43 (norm 70-432) so I think that negates the test. I will be speaking with the doctor soon if this gene test is positive.

@IrishHeart, yes this is the thing that upsets me most. If that doctor had taken the next step and had my SIL biopsied, we would have had the Celiac screen a few years back. I told her that you can't be slightly positive and she said "wow, I really wasn't paying attention". Her doctor recently told her that she can't cheat on the diet that it will cause her illnesses down the road. So to ME it sounds like that doctor knows she has celiac but isn't being honest with her. Or perhaps gluten sensitivity causes the same issues as celiac in regard to illness. I just find the entire things strange. Your history is my biggest fear, gene negative, but really Celiac. I work in clinical research and I fully understand that genotyping for celiac can be different for each individual. I understand that 95% will present a certain way but there will be other "formulations" as well. I would just like it to be simple, pretty please! I think it will be very hard to keep my DD on GFD without a diagnosis. I think she will cheat.

@Roda, it sonds like both of your boys are Celiac but I am a newbie here, lol. But you have inspired me that regardless of the test results she needs a GFD. Perhaps the family history is a non-celiac gluten sensitivity. We have friends with this and going gluten-free has changed their lives.

If anyone else has any thoughts, please let me know. I feel like I am feeding my daughter poison while we wait for the gene results. I do want her biopsied so I can convince my husband and other family members with major symptoms to get tested.

Share this post


Link to post
Share on other sites

One other note, she was diagnosed with anxiety and they are prescribing Prozac. However, her MD agreed that we should wait for the Celiac testing to be complete before we start meds because he realizes that could be the root cause. I was very happy he was onboard with waiting. Most of these docs are treating her symptoms individually and it is driving me insane.

Share this post


Link to post
Share on other sites

One other note IrishHeart, I would LOVE your recipes and shopping list. Also, thank you for sharing how un-dxd Celiac effected you. This is exactly what I am trying to avoid with my daughter. I explained that regardless of the test results we should go gluten-free just to see if she starts growing. I don't want her to be 4 ft 7 inches her entire life. I am tall and so is my husband. It is amazing to read everyone's histories. The suffering and long term effects seem so unnecessary.

Share this post


Link to post
Share on other sites

I do have to ask, How did this woman ever gain the reputation of a celiac expert? If she still looks at symptoms one at a time, and has the old stereotypical images of celiacs and cannot think outside the box that appears to be her brain? :blink:

Share this post


Link to post
Share on other sites

I do have to ask, How did this woman ever gain the reputation of a celiac expert? If she still looks at symptoms one at a time, and has the old stereotypical images of celiacs and cannot think outside the box that appears to be her brain? :blink:

Yes, even my girlfriend who referred me to her (she and her son are Celiac) was shocked that she didn't tie in the IgF-1 growth hormone deficiency and low BUN.

So strange. My girlfriend's son was negative on the bloodwork as well but positive by biopsy (which was not done for celiac but the pathologist caught it!). He was being checked for ulcers.

I am hoping to have the results by tomorrow. Then I have to start begging for a biopsy. If she is unresponsive then I will get my pediatrician involved.

NUTS.

Share this post


Link to post
Share on other sites

Another symptom is that she has broken her wrist twice and had trouble healing the second time. Both times happened when most kids would not have broken their arms. My physical therapist friend thought her bone density should be checked but I was denied that.

Share this post


Link to post
Share on other sites

If her results come back positive, she definitely should have a bone density test. If you are told she is too young, age has absolutely nothing to do with it. She needs her Vit. D, B12, folate, potassium, magnesium and calcium checked too :rolleyes:

Share this post


Link to post
Share on other sites

If her results come back positive, she definitely should have a bone density test. If you are told she is too young, age has absolutely nothing to do with it. She needs her Vit. D, B12, folate, potassium, magnesium and calcium checked too :rolleyes:

Yes, I will ask for that. Does gluten intolerance cause stunted growth, etc? I mean if she isn't Celiac do I just have faith that gluten intolerance causes the same issues like excema, low IgF-1, etc?

Share this post


Link to post
Share on other sites

Thank you for this site. I think I would have gone insane by now. I just need someone to chat with that isn't biased. My friends have been mostly supportive over the years with my daughter's issues but I don't tell them much anymore due to the vast amount of issues. It would be so great to have many of her symptoms "cleared up" with a GFD. I guess we will know soon enough.

Share this post


Link to post
Share on other sites

Yes, I will ask for that. Does gluten intolerance cause stunted growth, etc? I mean if she isn't Celiac do I just have faith that gluten intolerance causes the same issues like excema, low IgF-1, etc?

Of course not everything is attributable to gluten, but stunted growth and skin problems are often associated with gluten intolerance, whether celiac or not.

Share this post


Link to post
Share on other sites

You've gotten some great replies so far, I just wanted to throw this in. Stunted growth, low bone-density as well as other issues would tie in with celiac due to malabsorbtion of nutrients. In other words, because of the damage the gluten does to the digestive tract (intestines, etc.) one doesn't absorb some or most of the nutrients from the food. Technically I guess it's the body's reaction to the gluten antibodies that are created when one eats gluten-y foods that cause the damage... but the end result is nutritional problems which lead to other seemingly unrelated issues.

Share this post


Link to post
Share on other sites

@IrishHeart, Your history is my biggest fear, gene negative, but really Celiac.

I think it will be very hard to keep my DD on GFD without a diagnosis. I think she will cheat.

I feel like I am feeding my daughter poison while we wait for the gene results. I do want her biopsied so I can convince my husband and other family members with major symptoms to get tested.

No, I HAVE a DOUBLE HQ2 gene, actually. The story I told you --that was about another one of my doc's patients.

I was blood test NEGATIVE. Told it was okay to eat gluten. Went downhill for another year. <_<

I got a gene from both parents. We know NOW this is what killed my Dad. My 84- year- old Mom went gluten-free a few months after I did and feels GREAT! Her GERD, "IBS", insomnia, high blood pressure?...gone. I will take longer because I have Celiac and multiple deficiencies and complications. She may be NCGI (non-celiac gluten intolerant).

Regardless, the TREATMENT is still the same. No GLUTEN.

If your daughter stops feeling like hell every damn day, she be less likely to cheat. She will see that eliminating this food protein stops all her pain and moodiness and anxiety and eczema, etc.

Listen, no matter what your daughter's DX is...family members will take that knowledge and use it or disregard it. All of us can tell you how our family members turned a deaf ear to our pleading to be tested. NOT ONE of my family has been tested and THEY ALL HAVE GASTRO issues, autoimmune diseases, like diabetes, MS, Crohn's arthritis, thyroid disease and various depressive issues. No one will do this diet unless they feel as crappy as we did.

Do not concern yourself with all that right now. Get your daughter straightened out first.

Share this post


Link to post
Share on other sites

One other note, she was diagnosed with anxiety and they are prescribing Prozac. However, her MD agreed that we should wait for the Celiac testing to be complete before we start meds because he realizes that could be the root cause. I was very happy he was onboard with waiting. Most of these docs are treating her symptoms individually and it is driving me insane.

OMG!!!! a 12- year- old on prozac??? First of all, SSRIs (selective seratonin uptake inhibitors) are contraindicated in children under 18 as they can cause WORSE depression. :blink:

Secondly, if her gut is damaged, she will not absorb that medicine. It will circulate in her system and possibly cause more agitation. (this is exactly what happened to me)

If gluten is her problem, and in my opinion I think it is, the reason she has depression and anxiety is because of the lack of seratonin, which is produced in the gut. Malabsorption creates a deficiency in vitamin, minerals, amino acids, neurotransmitters. Gluten acts as a neurotoxin and affects the brain.

Many of us suffered anxiety and depression and it was CAUSED BY GLUTEN and/or CELIAC. Tons of medical evidence supports this. Please read a little about this, so you can understand what we mean.

http://www.celiac.com/articles/21758/1/Gluten-Sensitivity-and-Depression/Page1.html

http://depression.about.com/cs/diet/a/foodallergies.htm

Doctors think everything can be solved by drugs. They symptom-treat. They do not solve the CAUSE.

Please, please before you start this poor child on anti-depressants, have her biopsied, go gluten-free and see what happens.

Share this post


Link to post
Share on other sites

You've gotten some great replies so far, I just wanted to throw this in. Stunted growth, low bone-density as well as other issues would tie in with celiac due to malabsorbtion of nutrients. In other words, because of the damage the gluten does to the digestive tract (intestines, etc.) one doesn't absorb some or most of the nutrients from the food. Technically I guess it's the body's reaction to the gluten antibodies that are created when one eats gluten-y foods that cause the damage... but the end result is nutritional problems which lead to other seemingly unrelated issues.

Ciamarie, as I sit here, impatiently waiting for our gene test which if positive my doc is "willing" to do a biopsy in February (over my DEAD body will I wait until February), I am still trying to figure out my odds of Celiac vs. Intolerance for my daughter. From what I have read it would seem that gluten intolerance doesn't effect the gut but it does effect the gut of a person with celiac disease. This leads me to believe that with all of her issues she has celiac disease. Especially the low growth hormone, anxiety, excema, pale skin and dark circles, bone pain, broken bones, and the list goes on. I wonder if gluten intolerance could do all these things???

Even if she is gene negative, she will be on a gluten free diet for 3 months to see if it brings on puberty, growth and reversal of some of these issues. We will be keeping a food and symptom journal as well. My daughter is very excited about going gluten free because she HATES taking drugs and wants to be normal. She is miserable at every meal. Hungry but feels sick after a few bites. But starving so she begins to melt down. Our best meals are whole food meals: meat, veggie and a non-gluten starch. Funny eh?

Share this post


Link to post
Share on other sites

No, I HAVE a DOUBLE HQ2 gene, actually. The story I told you --that was about another one of my doc's patients.

I was blood test NEGATIVE. Told it was okay to eat gluten. Went downhill for another year. <_<

I got a gene from both parents. We know NOW this is what killed my Dad. My 84- year- old Mom went gluten-free a few months after I did and feels GREAT! Her GERD, "IBS", insomnia, high blood pressure?...gone. I will take longer because I have Celiac and multiple deficiencies and complications. She may be NCGI (non-celiac gluten intolerant).

Regardless, the TREATMENT is still the same. No GLUTEN.

If your daughter stops feeling like hell every damn day, she be less likely to cheat. She will see that eliminating this food protein stops all her pain and moodiness and anxiety and eczema, etc.

Listen, no matter what your daughter's DX is...family members will take that knowledge and use it or disregard it. All of us can tell you how our family members turned a deaf ear to our pleading to be tested. NOT ONE of my family has been tested and THEY ALL HAVE GASTRO issues, autoimmune diseases, like diabetes, MS, Crohn's arthritis, thyroid disease and various depressive issues. No one will do this diet unless they feel as crappy as we did.

Do not concern yourself with all that right now. Get your daughter straightened out first.

Yes, you are right about the family members. I have seen even diagnosed Celiacs be in denial about what it can do to your body to ingest gluten contaminated foods.

AHHHH, ok you are double gene positive. As I said my fear is that she is gene negative or DQ 9 which Europe and Middle East considers Celiac but the US doesn't and then she will not grant the biopsy. Many articles stated that if you are gene negative, there is a certainty of 99.9% that you are NOT Celiac. I just don't by it. I wonder if many of the NCGI or NCGS are really Celiacs that are undiagnosed because medicine hasn't figured out that there are other gene combinations that cause Celiac. I have to say that any doctor worth their salt should realize that because there isn't just one gene for Celiac even now. I run clinical trials for a living and I will bet you money that in 10-20 years they will find a few more genes that can trigger Celiac.

I know that my daughter has some issue with gluten. I FEEL it and see it in her symptoms. So regardless, she will be gluten free as soon as possible. I have already been educating my mother and have been looking for some alternatives for her favorite gluten foods (like Frozen Waffles: if anyone has a good brand, please let me know).

I watch her eat gluten now and cringe because I feel like I am poisoning my daughter all in hopes for a positive gene and a blood test. I won't gluten challenge her if she is gluten free and doing better so this is IT for me. It needs to happen now if we want a diagnosis. Do you know what I mean? I read about those challenges and I feel these mother's pain of poisoning their kids after months of feeling better. I don't think my daughter will want it either.

Thanks again for the support. I feel like we should take bets on her being gene positive or not. The lab told me they would have results to the doctor in 3 days which is today. The nurse from the office said it takes a week which would be Friday. In the meant time, I try not to obsess which is virtually impossible.

Share this post


Link to post
Share on other sites

Gene tests were used as exclusionary tools before. Now, we know other genes are associated with celiac. People on here are living proof! So the tests are questionable anyway. More research needs to be done.

Celiac can "trigger" any time in life. If someone is "neg" on biopsy or blood work in 2011, they may be "POS" in 2013 or 2016....

Consuming gluten is what determines this--but by then, how many OTHER health problems have developed? You simply cannot fathom what I have been through--as have so many others on this site--because of LONG unDXed gluten intolerance.

As for the Celiac vs. NCGI controversy about malabsorption/villi damage, there are loads of people who are NOT Dxed as celiacs and they have had extra-intestinal symptoms nonetheless. This is where the concept of a leaky gut comes into play. These people were deathly ill, had eczema, psoriasis, brain fog, anxiety, vitamin deficiencies and various other complications. Coincidence? Hardly.

Leading celiac researchers, like Dr. Fasano have already proven gluten sensitivity causes many symptoms in the body--just like celiac does.

If you want the menu/shopping list --and lists of safe/unsafe ingredients-- I can post it here or in a personal message. Let me know.

waffles? My husband liked the Van's frozen waffles, but since I cannot have soy flour, I did not taste them. I did have some at a gluten-free cafe though and they were AWESOME!! Recipes abound on the internet.

This change in lifestyle is not that difficult once you learn the ropes.

I do not trust doctors anymore. Well, maybe one--my new celiac-savvy GI. :)

They kept me ill for most of my life because the protocol for diagnosing celiac is just plain wrong. I knew in my heart what it was and I was RIGHT! I went from 3 years of starving, weak, in agonizing pain, out- of- my head with gluten stupor and feeling like death would be easier---to getting my life back!!!. I have gained some weight and my arms and legs work again. I sleep more than the 2 hours a night I got for over a year. I am not living under a cloud if inexplicable anxiety anymore. Dozens of symptoms slowly, gradually disappearing, though I have plenty more to go. I even had to push for proper follow up testing!! WE have to be our own best advocates!! The AMA just does NOT GET IT!! Sorry for the rant, but I am really upset about your kiddo and I wish someone had told me what this was when I was 12. My life would have been so different. One simple food protein. geesh! <_<

I am better now. Why? No medications, no magic bullet....just this: NO GLUTEN!! :)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

×