• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.
  • Celiac.com Sponsor:
    Celiac.com Sponsor:

18M Old - With Genetics Against Her
0

138 posts in this topic

Tomorrow is our allergist/immunologist meeting (finally!) and hopefully we will come back with some plan of action. Either additional testing or an action plan to manage her confirmed soy allergy.

 

She is still randomly reacting to something though, sh had a bad reaction on Sunday to something I cannot pinpoint.

I wrote her food log out before I forgot anything:

 

Sunday 4/21
Observed: flushed cheeks and bumps around mouth noticed around 3pm.

Foods eaten prior:
-Apple Cinnamon Nutrigrain bar (soyfree)

-1 piece of wheat bread for french toast (homemade, soy free)
-syrup (soyfree)
-turkey sausage (soy and gluten free)

-1 Betty Crocker Oatmeal cookie (soy in the ‘may’ category)
-Capri Sun fruit punch juice box.

-Stouffers’ Whale crackers (soyfree)
-sliced apple

*Flushed cheeks noticed at 3ish*

4:15-4:30 – three trips to restroom
4:30 – diarrhea response.
Irritability through evening and morning.

 

Yesterday when I picked her up from school I saw the flushing again and asked about her foods.  They saw the flushing as a result of her brief time outdoors which is possible, but I'm trying to make sure we are finding all these hidden sources of soy.

 

Yesterday she had mini-raviolis (soy content unknown so far, but obviously gluten) and fruit for lunch.  She got her soyfree alternatives for all the snacks of the day.

 

 

 

random note for my ailments:

Since doing the gluten challenge Feb-April, I am now losing a 2nd toenail randomly and continue to have bad headaches and nausea in the evenings after 4pm.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Met with the allergist yesterday...and honestly I'm not optimistic to answers.  That or I'm just frustrated.

 

We discussed her history and reaction patterns, I gave her the detailed food logs for the last three incidents, all of which were soy-free days.  Before we got to that she explained that soy is typically a minor allergy that kids do grow out of.  I then explained the cycle and extreme reactions she gets, gave her the daily logs and she agreed there is something else causing her the problem.

 

We have skin testing on 5/15.  She's testing wheat again because she's suspect of that despite the blood test (which is good for allergy sake, not celiac) and focusing on her suspected reactions to fruit.  She's testing a slew of things but specifically adding wheat and the fruits.

 

I was just slightly disappointed because while a very pleasant doctor , she seemed not overly concerned because she wasn't have any breathing or wheezing issues with her reactions (as in like a severe peanut allergy) so I felt like it was 'oh, she just gets red cheeks?--no biggie'

I explained that if whatever she is struggling with if anything like mine, she is likely in abdominal pain from spasms or cramps.  That we need to know what to avoid even if she's frigging labelled IBS, I just need to know what to weed out of her diet to let her not vomit once a week or have four to five bowel movements a day.

 

I'm cranky.

 

I've been nauseous every night for almost two weeks, no doubt stress induced. 

 

3/10 - Gastro appt - to discuss scope for reflux

3/15 - Allergist appt - for skin allergy testing

0

Share this post


Link to post
Share on other sites

You have every right to be cranky. Unfortunately - many of us have had many experiences just like this with our doctors....even more unfortunate is even the top doctors in their specialties do not often look at the entire patient - they treat symptoms not the whole body.

IMO - the worst sentence uttered by nearly every doctor I met with for several decades is:

What are you here for today? Rarely do doctors have time to play detective for their patients - sadly that is our job as patients and as parents of patients -- key word and what we need by the truckload = patience.

0

Share this post


Link to post
Share on other sites

And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that  is similar enough since her issues are prominently gastro related.  Just being clear that I am fully aware that celiac is not an allergy.

 

I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.

I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.

 

 

 

I am sure that my health deteriorating is due to the stress and focus on hers right now.  But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)

 

i need a nap.

0

Share this post


Link to post
Share on other sites

And I'm fully aware that I'm now more on an allergy quest than a celiac one if necessary, but honestly I haven't found another forum that is similar enough since her issues are prominently gastro related. Just being clear that I am fully aware that celiac is not an allergy.

I do know that I have a refluxy,ezcema laden kiddo who vomits regularly and has upset stomach daily who can barely get to the bathroom in time for her foul diarrhea. She will soon hit the embarassment issue at school for her explosive and noisy movements as the toilet is just a sub room within the classroom where everyone (classmates and teachers) can hear what's going on.

I have an irritable, clingy toddler every evening who needs her back patted to help expel the gas.

I am sure that my health deteriorating is due to the stress and focus on hers right now. But I'll keep chugging along and just vent and whine in here (nobody feel the need to respond! ha, just let me get it out somewhere)

i need a nap.

Honestly, I don't think you can determine if she has allergies vs. intolerances at this point. Allergies can be missed during testing, and there aren't reliable tests for intolerances. Over time, an allergic reaction may become crystal clear, unfortunately.

I wouldn't be surprised if all the testing comes up with no definitive answer...just evidence of reflux and gi irritation.

I truly think you'll have to take the issues into your own hands - elimination diets for all, to come up with answers.

I do hope the testing yields helpful information. All of you have certainly suffered enough.

1

Share this post


Link to post
Share on other sites

I hope you made sure that your allergist will deal with intolerances as well as true allergies. My allergist literally saved my live because my false negative blood tests meant the GI wouldn't even consider a biopsy.  A good allergist will give you a starting point for an elimination diet, a good idea for the both of you IMHO. Please don't put all your symptoms down to 'stress' and don't let the doctors tell you that her agony is in any way normal. I really hope you will do a strict elimination of gluten for you both. Inconvient as that may be. If you can't get her daycare on board looking for another care giver who will might benefit you both.

0

Share this post


Link to post
Share on other sites

Small update....

 

We met with the gastro on Friday, who is now bringing the scope on the table sooner  than later in response to the allergist's plan.

 

We have allergy skin testing on Wednesday of this week to determine any other major allergen issues.  I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.

 

she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)

 

Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"

 

So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.

0

Share this post


Link to post
Share on other sites

Small update....

We met with the gastro on Friday, who is now bringing the scope on the table sooner than later in response to the allergist's plan.

We have allergy skin testing on Wednesday of this week to determine any other major allergen issues. I am to call the gastro's office with the findings or to prompt them to obtain the results from the allergist.

she verbally simply said we would likely scope if any other allergens show as positive for an esophagus condition (dumbing it down for me I presume.)

Her handwriten note on the appt notes: "pending ai test (allergy skin test) probable endoscope to evaluate for ee"

So still moving forward, not celiac-based, but the quest to decipher her gastro and reflux problems.

Excellent news things are moving forward.

I would INSIST they take samples for Celiac testing while they scope.

1

Share this post


Link to post
Share on other sites

I would INSIST they take samples for Celiac testing while they scope.

ABSOLUTELY!

If we are sedating her at all, I want to address as many things as possible in one swoop.

0

Share this post


Link to post
Share on other sites

Skin testing of suspected allergens was a bust yesterday. Nothing, not even soy showed up positive despite the RAST test and marked improvement since its elimination.

 

The allergist was apologetic and explained that while she may not have an IgE reaction or response, she obviously is having a gastro response to soy and other stuff.  She agreed that the endoscope is what she would do next to find out truly how damaged her esophagus is from the reflux. 

 

I dropped off the negative results to the gastro when I left the building yesterday at noon, so I'll call this afternoon to prod them along to see what the plan is.

 

All I do know, is that since having to be off of zyrtec and allergy meds for the skin testing, she complained about her chest and belly hurting almost daily :(  she stopped her meds last Wednesday and Friday is when things started going downhill with severe diarrhea again and the complaints.

 

I'm not sure on the EGID front though either....its just the next dx to eliminate.

0

Share this post


Link to post
Share on other sites

It's possible that the allergy meds are acting on something that was untested. Any allergist will admit they only have tests for a fraction of possible allergens. It's also possible the allergy meds are suppressing her autoimmune reaction to something. I personally get great relief from autoimmune symptoms by taking antihistamines. It's a cheat to keep me going if things get really bad.

0

Share this post


Link to post
Share on other sites

It's possible that the allergy meds are acting on something that was untested. Any allergist will admit they only have tests for a fraction of possible allergens. It's also possible the allergy meds are suppressing her autoimmune reaction to something. I personally get great relief from autoimmune symptoms by taking antihistamines. It's a cheat to keep me going if things get really bad.

 

Ditto.

0

Share this post


Link to post
Share on other sites

Just wanted to pop in and let you know that our family has had heaps of difficulties with diagnosis and protocol development in our journey. To make progress, our family adopted a gluten, dairy and soy free diet. We experienced some extensive complications that resulted in hospitalisations for one of my children, most likely due to chronic gluten exposure at school. Our family manages both celiac and gluten allergy, and two of my gluten-free children report that Zyrtec helps with the bellyaches. We also find Zyrtec helpful in managing the extensive skin issues that we endure when our gluten exposures are not managed with enough diligence. We have been able to navigate childcare as well, and if your centre has good allergen training, they should be able to manage your child's medical condition well. Play dough is often one of the more difficult ones to work through for early childhood activities, and we have approached that in several different ways.

I am happy to share more specifics of our experiences if you want, and we have entirely more experience with juevenile arthritis issues than I want (a complication that I had not seen coming after months of extensive and chronic skin issues). I hope that you are able to find relief soon. We really had to scale back all dietary variables as much as possible to make good progress. We then had to refine our environmental exposures to ensure our good health. You may want to review "atopy" as it sounds like you may be dealing a bit with that. I didn't read all of the pages of this thread, so apologies if I missed important info. While my kids have not had elevated IgE readings, my skin tests and family history lead them to allergy predisposition. As such, and based on their past reactions, they each have a specific Allergy Action Plan. Good luck navigating this diagnostic process.

1

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

  • Forum Statistics

    • Total Topics
      107,040
    • Total Posts
      933,967
  • Member Statistics

    • Total Members
      64,615
    • Most Online
      3,093

    Newest Member
    LAG
    Joined
  • Popular Now

  •  

  • Topics

  • Posts

    • What would be helpful, Victoria, is to have a full thyroid panel done because you cannot diagnose anyone with Hashi's without a full panel.  It is more important to see what the actual hormone levels are than the TSH. Those would be Free T3 and T4.  You can have low hormone levels and normal TSH.  Your TSH is not too bad but if it starts to climb any higher, that would be cause for concern for Hashi's.  At least your lab seems to use the newer ranges for testing.  Many labs use outdated ranges that go to 5.00 for a cutoff. When my TSH was a 7, I could barely drag myself out of bed in the morning. I have Hashi's and your symptoms are a laundry list for it and Hashi's is very common with Celiac Disease.  You can start having Hashi's symptoms long before the blood work goes off.......like Celiac.
    • With the 3 positives that you have, Jenna, you have Celiac Disease. Positive tTg and EMA is a slam dunk. At this point, if you do the biopsy, you don't need it for diagnosis.  It will be to check for extent of damage.  Considering your health issues, it's pretty apparent you have a gluten problem anyway. Congratulations on figuring out your problem.  Now you can sit back and watch how amazing it will be when many of your problems resolve or improve dramatically. I had the same positives you did and declined the biopsy. 3 years after I was diagnosed, all my symptoms were gone but I do have other AI issues which are not, but they are much, much better just from going gluten free.  Be optimistic this will happen for you also!
    • I'm not sure what you mean by score, but her testing at the Mayo Clinic looks like what they describe in the Mayo Clinic link I included.  The posted results are in reverse order of the actual testing. Testing started with total IgA (for some strange reason labeled "Celiac disease, cascade" and does not include units).  It was within the normal range listed in the Mayo link under "Reference Testing" so testing continued with TTG IgA.  Jenna3, the total IgA is to ensure that the results of the rest of the IgA  tests are valid.  It is looking at total IgA antibody, not celiac antibodies. TTG IgA was a weak positive so testing continued with EMA IgA and Gliadin IgA which per the Mayo website is the deamidated gliadin peptides.  It looks like there should be an EMA titer reported. Hope this helps.
    • I second the request for a falafel recipe!
    • So I was googling my symptoms I still have after being gluten-free for 9 years and came up with Hashi's.   symptoms chronic c, even with extra magnesium citrate feeling tired all the time, despite using cpap for sleep apnea very succesfully  muscle weakness and joint stiffness, my lower back hurts so bad every day Hair loss memory lapses (getting worse) Dry skin im freaking cold all the time. Ac is killing me this summer.  High cholesterol, the bad one (been bad my whole life) Depression and low motivation to do lots of simple life tasks tendency towards anemia (my annual physical didn't check so I don't know current value) my TSH is 2.590 uIU/mL    0.600-3.300 uIU/mL   Is there anything I can do at home to help these things? Should I share this with my doctor? I have a new one who doesn't know me well at all. What do I say? thanks for any advice and feel free to ask questions!        
  • Upcoming Events