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New Here And Need Help! 8-Year-Old Daughter So Many Symptoms Even Though We Stopped Gluten Five Days Ago


worriedseattlemom

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worriedseattlemom Newbie

A little history about my sweet 8-year-old daughter. She's in a medical study (unrelated to celiac, though they do test for celiac as part of the study). She's been testing positive since she was about three, via blood test. In 2009 we had her scoped at Children's Hospital here in Seattle. The biopsy came back negative and, besides a few tummy aches and some occasional constipation, has been asymptomatic. We continued on with gluten.

 

This summer she ended up in the ER writhing around with abdominal pain. I was worried it was her appendix, which was why I took her in. They took an x-ray and said she was extremely constipated. We were given zofran and miralax and sent on our way.

 

Fast forward to three weeks ago when she got a gnarly stomach flu. The rest of the family has recovered but she can't seem to. She's still almost constantly queasy, has a stomach ache, and is constipated if we don't keep her on a regimen of prunes and a metamucil type fiber (generic). She has also developed a goiter (which I just read can be secondary to celiac), and her doctor said she looks anemic, so she's now taking Flintstones vitamins with iron. I would've preferred something more natural but couldn't find it in time.

 

She has an appointment next Friday with a pediatric GI doc and will be retested for celiac (though she's had at least 8 to 10 positives through this study she's in). My questions are: she stopped eating all gluten that we know of five days ago. Shouldn't she be showing at least a little improvement with symptoms by now? If she eats no gluten between now and next Friday will the test still be accurate?

 

Thanks for any help or input! I'm so scared and don't know how to help her feel better besides what we're doing. (Oh, and out of desperation I started giving her OTC Zantac tonight to see if it helps her sore throat/acid reflux, another ongoing symptom). So overwhelmed and sad!!!

 

~Angie (and Claire)

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cyclinglady Grand Master

Welcome!

 

Take a deep breath!  There are lots of folks (parents) who will be willing to respond to your posting (just give it a day or so).  

 

Your daughter has had a complete Celiac Blood panel several times since she's been three?  Do you have the records?   Are you sure they were testing for Celiac Disease?   From my understanding, even though the biopsy may have been negative, many doctors will give a celiac diagnosis.  She has not been asymptomatic (constipation and tummy aches, even if they happen just occasionally, are symptoms).   Please go to the University of Chicago's celiac center website to research more about testing and what actual tests are ordered by doctors.

 

Looks anemic?  What does that mean?  To get an anemia diagnosis, the doctor has to order lab tests (e.g. CBC).  

 

Goiter?  What are her thyroid lab tests results?  Does she have Hashimoto's Thryoiditis?  That really can cause constipation if she's hypothyroid.

 

For relief it can take months to several years for many to heal (especially adults).  You should read up on cross contamination too!  You might think you're gluten free at home but you may not be!  I'm not sure those Flinestone Vitamins are gluten free.  Please read the bottle.  It should say "no gluten"!  Or check their website.  We use Gummie Vits at our house and the bottle states "no gluten".  

 

There's a "newbie" section on this site that is very helpful and here's the link:  

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

 

She should probably still eat gluten until all testing is done even though she's been off gluten for only a few days.  That's a hard call, and I'll defer to some of the experts around here.

 

I'm so sorry she's sick.  I'm not a doctor, but from what you presented, it sounds like she had Celiac.  What a shame to have suffered for so long!

 

 

Best wishes!

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WinterSong Community Regular

Hi, 

 

So sorry to hear that you and your daughter are struggling through the diagnosis process. 

 

Ditto to everything in the post above. She needs to continue to eat gluten until she finishes her tests. If you do decide to have another biopsy, you could also consider having a gene test done. I've recently learned that doctors can skip the biopsy if they choose and diagnose Celiac based on positive blood tests + gene test + symptoms + response to gluten-free diet.

 

It certainly sounds like she could have Celiac. Have you and the rest of your family been tested? Remember that it's genetic, so you should all be tested, as well. 

 

Five days into the gluten free diet many people do not feel a lot of relief. There could be some cross contamination like cyclinglady said, or she could be going through gluten withdrawal (which actually seems to make things worse before they get better). 

 

Good luck, and I hope she feels better!

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MominSoCal Apprentice

Just to add - my DD is 7yo and tested weak positive for Celiac and had a negative scope.  She has suffered from constipation since birth, which worsened a few years ago.  We did every intervention, diet change they asked and she still suffered.

Finally - we got to a GI doc and he recommended gluten-free, despite the negative scan.  She had been on daily Miralax for over two years - and within one week - was able to be completely off of it.

Now I want to add, we did some behavior modification a month before going gluten-free - and I am sure that has helped.  Here is our routine:

She gets up 20mins earlier than before

Goes pee FIRST thing when she gets up

Eats breakfast - gets dressed and then sits for 15mins on the potty (she takes her tablet)

  *If she goes #2, she cannot get up until she has ANOTHER mvmnt

She has to do this for all meals that hare eaten at home - with the AM being the most important

We eliminated juices not conducive to going (such as apple,orange)

She has mostly single pit juices (cherry,mango,pear,apricot,prune) or combos of those

 

If she has been struggling for a long time, the body needs to remember how this works on a regular basis.  

 

Hoping she feels better soon

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nvsmom Community Regular

Oh dear.  :( The doctors told her to continue eating gluten in spite of multiple positive tests just because they didn't happen to biopsy the areas that were damaged.  :angry: Did they say why they did not think her positive results were caused by celiac disease? Most celiac tests are pretty specific to celiac disease. The tTG IgA is one tests that has a "high" false positive rate of between 1 and 9% of the (weak) positive results and those false positives are almost always caused by thyroiditis, diabetes, crohn's, colitis, liver disease or a serious infection... doctors should know this!  (((hugs)) to you.

 

If you have her past tests, we might be able to help you interpret them. Same goes for the biopsy results.

 

I would let her have her last Oreos or Kraft Dinner, and then make her gluten-free as soon as the doctor is done with testing (or you are). That is plenty of evidence for you to treat your daughter with the gluten-free diet even if the doctors don't get on board. My kids tested negative in blood tests but because I'm a celiac, and they have symptoms, I went with the assumption that they are celiacs too - I'm glad I did as they are much better.

 

You should probably get the rest of the family tested too as celiac disease runs in families.

 

Symptoms can take weeks to months to improve; sometimes it takes years. As Cyclinglady said, if her thyroid is under-functioning, that will cause worse constipation and she may need hormones to treat that issue. If she gets tested for thyroid function, request a TSH (should be near a 1 regardless of most labs' ranges), free T4 and free T3 (should be in the 50-75% range of the lab's normal reference range), and TPO Ab.

 

Best wishes.  I hope she feels better soon.  (hug)

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GFinDC Veteran

Hi,

 

I don't understand 10 positive tests and no diagnosis myself.  But, you can hold out for a doctors ok to put her on the gluten-free diet or go with a more cautious approach and do it yourself.  We don't need a doctor's permission to eat a gluten-free diet.  Since she has developed a goiter it is possible she is hypothyroid.  Hypothyroidism can cause constipation.  Is she taking vitamin pills with iodine in them?  Is she eating a lot of soy?  Soy is a goitrogen and should be avoided for children IMHO.  Recovery from her symptoms is going to take a little while as she has a couple issues going on, gluten intolerance of some kind and thyroid issues.  Your doctor should test her for Hashimoto's thyroiditis (tpo antibodies).  Hashimoto's thyroiditis is an autoimmune condition that attacks the thyroid.  It can cause swelling in the throat and sometimes pain and warmth in the throat.  Hashimoto's and celiac kind of go together sometimes.  They are both autoimmune conditions, and people with one autoimmune condition are at higher than normal risk to develop a 2nd autoimmune condition.

 

Celiac is autoimmune.  The immune system doesn't shut off a response instantly.  The immune system may keep making antibodies for weeks to months after the trigger is removed.  So recovery is not an over night thing when going gluten-free.  You can expect each time she gets a small amount of gluten that the immune system will  mount a new attack.  That will probably be a 2 week reaction, but it varies between people.  Children's immune systems are different from adults so they may recover faster.

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worriedseattlemom Newbie

I'm humbled that you all took the time to read my post and respond. Thank you! It means so much!

 

Claire hasn't had her thyroid blood work done yet. That should happen one week from today when she has her other blood work for celiac. I honestly noticed the goiter (it's relatively small and my husband can't even see it), a month or two ago, Googled and it and it didn't seem to be too scary and seemed somewhat common in kids, so I didn't fret too much, and just figured I'd mention it to her doctor at her well-child visit, which was one week ago and was the appt. at which her ped. confirmed the presence of the goiter and referred us to a GI doc.

 

Our house is definitely not gluten free. I would consider it as I don't eat gluten either (tested neg to celiac but am somewhat intestinally sensitive), but my son has severe food allergies to dairy, egg, peanuts and tree nuts, and wheat is one thing he can reliably have. Of course my main concern is for my son and daughter, but at times I just don't know how I'm going to manage all these dueling food issues in our house. I had myself a good cry a couple nights ago, but that's done and I just have to move on and plan. I have been trying to be careful about not letting her food touch crumbs from our toaster oven, etc. I may one day get a toaster/breadmaker just for her, but I'm kind of overwhelmed right now and am taking baby steps. Maybe the whole family goes gluten-free for a few months so we know for sure. I also did check on the vitamins. No gluten is used, but they can't guarantee they are gluten-free because of sourced ingredients. I will search for a better iron alternative.

 

I was also reading, I think on this site, last night about lactose intolerance possibly happening to celiac patients while the gut is damaged, so I've cut out all dairy for her starting today, hoping that makes her feel better.

 

I gave her a Zantac and Zofran this morning, but she still said she felt bad and was queasy. :( She is also having a tough time at school with a not-great teacher and some anxiety/grumpiness about class and food.

 

Anyway, thanks once again for all the info and for reading my super long post. Once we get her blood work results next week I'll update. This website has been a big help already (and I just found it last night). At least there is support and community here for us. Happy Friday, everyone!

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cyclinglady Grand Master

Are our families related?   :lol:

 

My husband's been gluten free for 12 years (no formal diagnosis) and since I was diagnosed with celiac disease in March, our entire house is now gluten free with a few exceptions.  My 12 year has learned to adapt.  I purchase gluten prepacked foods that she takes in her lunches.  She eats gluten filled cookies, but only at the table, never in my car, and she must wash her hands ASAP in order to not contaminate us.  She will tell me that she prefers my homemade gluten-free baked goods over store bought!

 

I also have been diagnosed with milk, nut, garlic and egg allergies.  When I prepare meals, none of those ingredients.  Hubby and daughter can eat ice cream while I eat a sorbet.  Nuts using go into lunches.  I do cook eggs for them, but I don't eat them.  My egg allergy seems now to be more of an intolerance, I can can eat them in baked goods.  So, it's possible to learn to cook around gluten free and allergies!  I also host all family gatherings, because I want to insure everything is gluten free.  

 

I think you'll find that it's easier to go completely gluten free in your house since your kids are young.  

 

Eliminating dairy products for a while (hard to digest with damaged villi) is a good idea.  Add in some calcium gummie vitamins to her multi.  Ask the GI to check her levels of other vitamins and minerals.  Most folks with celiac disease are deficient in many!  I was so iron deficient that I developed anemia and calcium deficient that I fractured a vertebrae doing nothing!  The good news is that kids heal so fast!  

 

Lastly,  take care of yourself.  "Put your oxygen mask on first before assisting others!"

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WinterSong Community Regular

 

 

Lastly,  take care of yourself.  "Put your oxygen mask on first before assisting others!"

 

 

Agreed! Take a few deep breaths. It may seem like a lot to handle all at once, but have faith that things will get better :)

 

Welcome to the board!

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MChase Apprentice

Toaster oven could be contaminating her food.  Plus, what is she eating at school?  Are you packing her lunches?  Is she trading part of her lunch?, eating snacks, cookies, etc at school?

 

New to gluten-free myself, but after reading lots of information, the following could be contaminating her food:  Cutting boards (plastic and wooden), wooden and plastic utensils and containers, toaster, toaster oven, any non stick cookware (if it has any minute scratches, gluten can be hiding in it), blender, food processor, bread maker, cast iron skillets, colanders/strainers.   Plus, if you wash a dish that has had gluten on it and then wash her dish, the sponge/dishcloth can harbor gluten.  I cleaned out my kitchen and am running on the bare necessities until I can afford to buy more things (Dollar stores have been a life saver).  

 

Check all medications/vitamins/supplements.  I made the mistake a week ago and took some medicine and couldn't figure out why I had intestinal issues.  I took it again today and sure enough, had major issues.  I looked at the back and found "sodium starch gycolate".  I looked it up and it can be derived from wheat.   

 

Just because a food doesn't say "wheat, barley, rye, etc" does not mean it does not contain gluten.  Modified food starch, artificial or natural flavoring and a bunch of other ingredients can contain gluten.  Make sure you check all condiments too.  

 

Are there any pets in the house?  Where is their food kept?  Is she feeding them?  Most pet food contain gluten.  

 

I'm sorry your babies are going through this.  As an adult, this seems overwhelming, I cannot imagine having my child/children with such bad reactions.  Good luck to you and your family.  

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worriedseattlemom Newbie

Thank you for your support, everyone!

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worriedseattlemom Newbie

Hi everyone,

 

I have an update! We got in to the pediatric GI doc at Seattle's Swedish hospital a day early. Didn't love the GI doc we went to bedside manner-wise, but she seemed to really know her stuff. She said about ten times that Claire seems like a "classic celiac" case. She read her report from her '09 scope and was shocked that the GI doc at Children's Hospital declared her negative, since there was at least one patch out of seven that was a low positive. I wish we would have known this so her symptoms hadn't gotten to the point where she's so miserable. Anyway, she had blood drawn for the TTG (I hope I have that right) and thyroid and we got a referral to an endocrinologist. I just can't believe my vibrant, amazing girl has all these health problems. But I guess it could be worse! My ten-year-old son has always had food allergies so it's all he knows, but this is all new to Claire. I actually started to panic tonight thinking that she's never tasted angel food cake before and now she never will.

 

My husband and I are feeling shaken up and pretty sad today. Can use all the positive vibes I can get...

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nvsmom Community Regular

(((hugs))) I'm glad this new doctor knows her stuff.

 

The first few month gluten-free are the toughest - getting used to a new way of eating and thinking about food. I bet by the time spring rolls around, you will all be pros at this.

 

Are you getting the rest of the family checked for celiac disease? You might want to get your son checked out too. There is a genetic link, and not all celiacs have symptoms.

 

Don't discount foods yet. There are gluten-free angel food cake mixes out there, and they are pretty easy to make from scratch if you can't find a box.  My boys actually prefer gluten-free angel food cake. In fact, that's what my son requested for his birthday party this weekend.  :)

 

Best wishes.

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cyclinglady Grand Master

Thanks for the update!  I'm glad you are finally getting some answers and help!  

 

Yes, it's hard at first going gluten free and it's a pain to eat out easily, but at least this is an illness that you can treat with good wholesome food! Things could be worse!  Claire's finally going to start feeling better and so will you!   

 

Continue to do as much research as possible on going gluten free (it helped me through my own grieving process) so that you can insure that your daughter's health will improve fast!  

 

Hmmm...angel food cake.  I haven't tried that one yet but there are plenty of recipes online for gluten free versions.

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1desperateladysaved Proficient

Thanks for giving an update. She is starting to get better and would be glad to hear of her symptoms subsiding soon.

 

D

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GFinDC Veteran

Hi,

 

Don't be real scared, celiac is one condition that can be managed well by diet alone.  That means it is pretty much under your and your daughter's control.  The scary part comes when people who don't take it seriously and cheat on the gluten-free diet or ignore cc (cross-contamination) issues.  It is not unusual for it to take years for people to be diagnosed with celiac disease.  I think they used to say average was 9 years but it may be more like 7 or 8 years for diagnosis now.  So you are getting it figured out faster than the average, which is good.  The more serous complications that can arise with celiac are mostly from long term consumption of gluten over years of time.  Basically not following the gluten-free diet for years.  Ongoing inflammation and mal-absorption are two of the big causes of problems there.  I doubt very much you are planning to ignore the gluten-free diet for years at a time.

 

Some of the tips below won't apply to her case, but most will.  Testing for everyone is important, even if they don't have GI symptoms.  Many people with celiac disease don't have GI symptoms, so it is not wise to assume that without them there is no problem.  Celiac is inherited, or the genes are anyhow, so it came from somewhere in the family tree.  It might help to think about illnesses in grandparents/ aunts/uncles on either side.  Autoimmune diseases maybe more prevalent in one family than the other.  If so, that is probably the family where the genes came in.  And that family may have other celiacs in it too.  Possibly undiagnosed celiacs.

.

 

Some starting the gluten-free diet tips for the first 6 months:
 
Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.
Watch out for cross contamination.
 
Helpful threads:
 
FAQ Celiac com
 
Newbie Info 101
 
What's For Breakfast Today?
 
What Did You Have For Lunch Today?
 
What's for dinner tonight chat?
 
Dessert thread
 
Easy yummy bread in minutes
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  • 3 weeks later...
worriedseattlemom Newbie

Update: Hi all! Not that you were waiting breathlessly for my update, but here's what we've learned: Claire tested negative for her TTG, but her GI doc said that's only because she's IgA deficient. If she weren't IgA deficient, the doctor believes her TTG would be positive (like I mentioned before, Claire has tested positive numerous times on a more sensitive test that a T1 diabetes study she's in uses (she has the gene for Type 1, but not diabetes at this point). Her D-eamidated gliadin test came back high at a 27, which her doctor said is a marker for celiac.

 

She also tested positive for Hashimoto's Thyroiditis, both on a blood test and with an ultrasound. We are now trying to figure out if we should have her scoped. Seems pretty clear that she has celiac and I hate to do any unnecessary testing, but it would be nice to see how much damage she has down there. She hasn't been complaining about stomach pain as much lately, but is queasy most days. She's been "gluten free" for about 3 weeks, but that doesn't take into account any mistakes I have been making. My awareness gets better each day, but I do worry about cross-continamination issues. I'm very careful, but who knows if she's still getting microscopic amounts.

 

Anyone have advice on the scoping? It's so hard to make your kid go under general anesthesia, but also hard to watch them sick without knowing exactly what's going on in their gut.

 

Thanks!

Angie

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cyclinglady Grand Master

You are making progress! Yeah!

When will she get scoped? She really needs to continue to consume gluten until all testing has been completed. I would hate for the biopsy to be negative and then have her go back on gluten only to have her get sicker. You would hate to trip that diabetes gene by not complying or addressing celiac disease issues. I don't know if that would happen but one autoimmune disease typically leads to another. Please talk to your doctor about this and check out the University of Chicago's Celiac website about testing protocol. if the doc is willing to DX her without the biopsies, then keep her gluten free.

Search the forum for tips/advice about scoping kids. I have Hashi's and it has been manageable (except for the last year or so when I was not yet diagnosed with celiac disease.

Keep us posted and take care of yourself, Mom!

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GFinDC Veteran

Hi,

 

Since she is off gluten, it is going to be important to do the endoscopy right away.  The damage will be healing and the tests are not any use if there is no damage to test.  If it is going to be more than a few more days, I suggest putting her back on gluten for now, until the tests are completed.

 

Some reasons to consider going ahead with the endoscopy:

 

She is going to live with the condition for the rest of her life.  So it makes sense to try and be positive of the diagnosis.

 

Schools may be more willing to accommodate her condition if she is diagnosed.

 

Clinical trials generally require biopsy confirmed celiac to participate.  That is not a big concern for most people tho.

 

It may be easier for her to stick with the gluten-free diet if she knows she was fully diagnosed.

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Gemini Experienced
Update: Hi all! Not that you were waiting breathlessly for my update, but here's what we've learned: Claire tested negative for her TTG, but her GI doc said that's only because she's IgA deficient. If she weren't IgA deficient, the doctor believes her TTG would be positive (like I mentioned before, Claire has tested positive numerous times on a more sensitive test that a T1 diabetes study she's in uses (she has the gene for Type 1, but not diabetes at this point). Her D-eamidated gliadin test came back high at a 27, which her doctor said is a marker for celiac.

 

The DQ-2 gene for Celiac is also the gene for Type 1 diabetes so your daughter may never trip for diabetes fi she remains strictly gluten-free. Many people do not know this but the doctors should have.  I am totally blown away that you were advised to keep her on a gluten diet with her history and these idiots are guilty of malpractice.  Unbelievable.

 

What more sensitive test was done that was positive for Celiac, that is used for a Type 1 diabetes study?  I apologize if I got that wrong but I am really interested in what that test is.  I have Celiac and Hashi's and my brother is a Type 1 diabetic who I strongly believe has Celiac also but he has stupid doctors that tell him no.

 

I won't give my opinion on the biopsy because she's your child and you get to make that decision. But please know that Celiac is pretty easily managed, once you get the hang of it and your daughter will want for nothing, food wise.  There is no better time to be gluten free. If you do decide on the biopsy, I would still have her go gluten-free right away and never eat gluten again. She has already tripped for Hashi's and you don't want her to end up with Type 1 diabetes.  She has a diagnosis already and any biopsy done will just be to check for damage.  If they haven't diagnosed her based on all you told us, then you need new doctors right away!

 

Be patient...your daughter will be fine but it will take awhile for all the symptoms to go away.  :)

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worriedseattlemom Newbie

Thanks once again for your amazing support! I'm not sure what the test is that they use in her T1 study. I can ask for more info on that, though. I would love to be able to provide that information. The GI doc here in Seattle did say that all of the kids who come out of this study, if they test positive for celiac in the study, they are ALWAYS positive. In her experience.

 

I do plan on keeping Claire off gluten forever, now. I never want her to have to go through feeling this way again. It breaks my heart that she is constantly queasy, but is still having to function. Her energy level and appetite are good, so I believe it's a low level nausea, but still unpleasant for her.

 

I think you're all convincing me to do this scope....

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Gemini Experienced

I had nausea for years and it completely resolved on the gluten-free diet.  Never came back, unless I am accidentally glutened but that is a rare occasion at this point.

 

It's not surprising that the kids in a Type 1 study might be positive for Celiac.  Type 1 diabetes, Hashi's thyroid disease and Rheumatoid Arthritis are the 3 BIG autoimmune diseases closely asscoiated with Celiac. There are others also but these 3 occur more often with Celiac than any other.  I am guessing it has a genetic component to it.

 

You could always see how your daughter does on the gluten-free diet and if she does not improve enough after a set amount of time, then you scope to see if there is a reason why.  But most people do fine on the diet and have continued improvement over time.  I went with that scenario because I was deathly sick at time of diagnosis and didn't fancy a scoping. The nausea thing was a huge problem for me.  I never ended up having it done because I did so well on the diet and 8 years later, still feel great. My stomach is no longer the focal point of my existence.  It rarely give me grief anymore.

 

Good luck!

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worriedseattlemom Newbie

That is so great to hear, Gemini. Thank you for sharing that.

 

We've decided against the scope for now. I scheduled it today, then they called back to say she would need to gluten load for two weeks and then be scoped. I just can't take that step backward with her right now. We're on the right path I feel and I don't want her to feel terrible for however much longer just so we can get a totally bulletproof diagnosis.

 

I did get her test results from the study she has been in. Maybe someone can help me decipher? I can't figure out what they mean, though the study director said they are a high titer.

 

5/16/2012 Iga Transglutaminase 0.352

12/1/2012  "            "                   0.120

5/4/2013    "            "                   0.226

10/11/2013 "            "                  0.433

 

Anyone?

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frieze Community Regular

That is so great to hear, Gemini. Thank you for sharing that.

 

We've decided against the scope for now. I scheduled it today, then they called back to say she would need to gluten load for two weeks and then be scoped. I just can't take that step backward with her right now. We're on the right path I feel and I don't want her to feel terrible for however much longer just so we can get a totally bulletproof diagnosis.

 

I did get her test results from the study she has been in. Maybe someone can help me decipher? I can't figure out what they mean, though the study director said they are a high titer.

 

5/16/2012 Iga Transglutaminase 0.352

12/1/2012  "            "                   0.120

5/4/2013    "            "                   0.226

10/11/2013 "            "                  0.433

 

Anyone?

what are the "norms" for this test?

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worriedseattlemom Newbie

what are the "norms" for this test?

That's what I wasn't sure of, but I just found out that anything over .05 is positive, so....yah....she's tested very high.

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    • trents
      Welcome to the forum community, @Jesmar! The HLA DQ2 and DQ8 genes were the original halotypes identified with the potential to develop celiac disease. Since then, other genes have been discovered that apparently afford a predisposition to celiac disease. As is always the case, these new discoveries are not yet common knowledge and not yet widely dispersed in the medical community. It is not genetically as black and white as we once thought.
    • trents
    • knitty kitty
      @Nacina, I would add a B Complex to all that and extra thiamine B 1 and magnesium glycinate, and high dose Vitamin D to get his level up faster.   We need the B vitamins to repair our body and for energy to function.  Thiamine B 1 is especially important for athletes.  Thiamine works with magnesium.  Thiamine and magnesium deficiencies can cause constipation.  All eight essential B vitamins work together.  Due to poor absorption in celiac disease, supplementing with B vitamins boosts our ability to absorb them.  Here's some reading material that is helpful... An open-label, randomized, 10 weeks prospective study on the efficacy of vitamin D (daily low dose and weekly high dose) in vitamin D deficient patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6618212/ Micronutrients Dietary Supplementation Advices for Celiac Patients on Long-Term Gluten-Free Diet with Good Compliance: A Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6681258/ The Effects of Thiamine Tetrahydrofurfuryl Disulfide on Physiological Adaption and Exercise Performance Improvement https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6073388/ The Effect of a High-Dose Vitamin B Multivitamin Supplement on the Relationship between Brain Metabolism and Blood Biomarkers of Oxidative Stress: A Randomized Control Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316433/ B Vitamins: Functions and Uses in Medicine https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9662251/ Vitamins and Minerals for Energy, Fatigue and Cognition: A Narrative Review of the Biochemical and Clinical Evidence https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7019700/ A functional evaluation of anti-fatigue and exercise performance improvement following vitamin B complex supplementation in healthy humans, a randomized double-blind trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10542023/ Effects of thiamine supplementation on exercise-induced fatigue https://pubmed.ncbi.nlm.nih.gov/8815395/ The effects of endurance training and thiamine supplementation on anti-fatigue during exercise https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4241913/ Hope this helps!
    • Jesmar
      Hi all.  I am an 18 year old male. Recently I had anti ttg-igA tested and it came back as 9.1 IU/ml (weak positive) (increased from previous test which was 5.6iU/mL) . What does this mean please? I am booked for an endoscopy however, i am negative for both HLA DQ2 and DQ8. I have a family history of coeliac. 
    • Tanner L
      Yes and variations in their sources for natural and artificial flavors could be the culprit as well.  I might be on the more sensitive side, but I do fine with McDonald's fries and burgers if I take the bun off, and other foods that have certified gluten free ingredients and only cross contamination risk preventing the gluten-free certification. 
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