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1 Year gluten-free And Still Not Doing Well...need Help


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10 replies to this topic

#1 Andrea_P

 
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Posted 30 April 2014 - 09:57 AM

I will try and make this as short as possible.

 

After 2 years and three peditrician's we finally got the diagnoises of Celiac through blood and biopsy in May of last year. Since there are so many allergies in the house (my son and I have asthma and many alleriges) we decided to make the entire house gluten-free. Anyway, my daughter (8) did great the first couple of months and stopped complaining of stomach aches but the last 5-6 months she started complaining again. Now I know it most likely is not coming from food (we are mainely Paleo/Whole30 in our house with minimal processed food) I cannot for the life of me figure out what is going on. Back in Sep we did a follow-up with her gastro doctor of Children's hospital in Chicago and was told her numbers are not going down. I asked what more I can do for her and her stomach aches and was told since she is gaining weight (she was always small) to just not worry about it right now. As a monther I cannot just shrug off news like this knowing what kind of damage her body is getting when it is still in a "fight" mode. I left that doctor and took her to a naturalpath doctor instead. We found out all kinds of information with that doctor. They did a food sensativity test (cannot remember the name of the test) and she came back sensative to: dairy, soy, popcorn and sugar +plus about 100 other things. I was told her body is acting like a diabetic and cannot process the sugar. It was suggested that anytime she eats sugar, even natural sugar like honey and maple syrup, that she should eat protein with it. Well that worked for a month or two and now we are back to stomach aches plus headaches all the time. I have scaled back completely on sugar (less than 8gm per snack/meal) and now she still has problems. I am at the end of my rope with this and feel I have nowhere to turn for help for her. She has already given up so much I am not sure what else I can pull from her diet. I already have a fear of leaky gut syndrome since her diet is so strick/small already.

 

To make matters worse she started doing CrossFit (my husband and I both CrossFit). This has made her extremely hunger all the time but I cannot figure out what to feed her to keep up with what she is burning (add in ADHD - a child that NEVERS sits or stops moving).

 

Has anyone had issues with processing sugar? Was there something you found that helped out? Enzymes, protein shakes... anything??

 

Signed,

A desperate mother ;-(


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#2 Telith

 
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Posted 30 April 2014 - 11:59 AM

1) Is there anything consistently that she does well with food wise, something that the symptoms aren't as severe with?

 

2) are you opposed to adding back in easy to process foods like rice and beans?

 

It sounds like either her body is still reacting to something, or she's not getting something that she needs.  And it's going to be hard finding that thing without a stable place to start.  I only suggest rice because for me, it's been a god send as I transitioned.  Even when I felt awful and hated the thought of food, my body would still let me eat it and digest it. Being able to have that one simple food let me heal enough to figure out what dairy I needed to find an alternative for, and what I could still process, what I was craving for real and what was simply a body memory.

 

I do strength training, and I use a vegan rice based protein powder in soy and fruit smoothies, but the only major thing I've cut out of my diet is Gluten.  I still have pasta, and baked goods that I largely make for myself.  My parents are both gluten free, my mother is a vegan because she feels better without meat, but my dad eats meat because his ability to absorb nutrients has been nearly destroyed.  The human body doesn't fit one singular diet plan, your daughter may need some foods added back in.

 

It also may be a completely environmental thing, and not food related at all.  Just something to think about.  I had Lyme disease mimicking a lot of my Celiac symptoms once, took us months to think to run a blood test for it, I didn't have the target shaped bite.


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Second Generation Celiac, inconclusive diagnosis.  Gluten Free for 2 years, lived with a celiac for 10 years.


#3 StephanieL

 
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Posted 30 April 2014 - 12:36 PM

Where did her numbers start and where are they at now?  It took a very long time and some additional interventions before my DS had normal blood work but it was short lived. 

 

Intolerance testing isn't scientifically proven. It often leads, as you've seen, to very restrictive diets with little/no real results.  A food log is much more apt to get you information that's useful.  

 

You haven't said what allergies you are dealing with, is dairy one? If not may people with Celiac have dairy issues. A good probiotic was a real game changer for us! After 4 years of never having a normal BM within 3 days my kid was like a new person in that dept.   Have you looked into things at school? Art supplies?  Is she a thumb/finger sucker? Is she perhaps sneaking things away from you?


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#4 Andrea_P

 
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Posted 30 April 2014 - 05:37 PM

I should have specified that she is partial Paleo with rice and black beans. She is not a meat eater (just doesn't like it much unless it is in a form of a nugget) so I added black beans and rice back in awhile back. As for her numbers, that is a hard one. Apparently her Pedictrician ran a different test so we could not compaire it to the last one (34.1 IgA TTG test). The gastro just said that was higher than he wanted or expected to see. 

 

She is an EXTREMELY picky eater so it is really hard for me to get her to try new things. I have hidden protein powders and other stuff in smoothies but seeing as we live in Chicago this winter has been brutal and the smoothies haven't been happening. Now that the weather is better we will go back to those a few times a week. Also once school is out I will be able to go back to doing "hot" lunches which opens up a lot more possiblities instead of veggies and lunchmeat - she hates gluten-free breads and I have tried many including different wraps.

 

If you are asking what allergies she is dealing with it would be dairy for sure. She was pulled off dairy about 9 months ago. She had an EAV screening done which has helped us navigate a little. I was surprised on how acurate it was. All the things I know through conventional tests came back postive for me on the screening too - I have A LOT of food allergies but not Celiac. I truely was amazed at the test and how easy it was. Basically all dairy is out (goat, cow, feta...) a handful of fruits, aspartame and all natural sugar plus food dyes according to the screening. We also give a good probiotic everyday plus a multivitamin. It was also suggested she take Vitamin D.

You need a flow chart to follow all the food allergies in our house and that is a big part of my frustration - finding something that everyone can and will eat... without complaining.

 

I do know that she has made some mistakes with foods and ate something on accident but typically she is an very honest kid who does listen and doesn't cheat.

 

Now that you mentioned pasta, I might have to reintroduce it, we got away from that a little when my son and I found out we have a problem with corn - I really didn't like the rice pasta all that much. I might have gone off the healthy deep end a little too much with her. I am trying to make a change in our families eating habits and move to more "fresh" foods but might have to give a little for her. My fear is she latches onto that stuff and then gives up on the healthy food. She will just not eat and lose weight if she doesn't like the food choices in the house. I am a little strick in that way. I always say I won't be a short order cook but maybe I will bend the rules a little.

 

It is just frustrating. I feel like I take one step forward and then five back. I am having a hard time finding a family balance and a new normal.

 

Her biggest problem now is she will eat and then turned flush white with red circles under her eyes. I am told that is a sugar crash that is happening. Sometimes she will complain of a stomach and others times say nothing at all. I think she stop telling me so I wouldn't take foods away that she likes. I just feel bad that there is nothing I can do to help her out.


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#5 StephanieL

 
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Posted 30 April 2014 - 06:20 PM

So you aren't nor is she actually allergic from this testing you are talking about. These are intolerances  dx by EAV?  I have to say, there is not any peer reviewed literature documenting the scientific validity of this kind of testing so I'm not sure how many Dr's would look at those result and feel comfortable pulling those foods.

 

I understand wanting to be healthy and make good food choices but putting anyone, esp. a pre teen on such a restrictive diet can backfire in a lot of ways. Some rebel, some make worse choices when allowed, some will not be able to make good choices because they haven't been able to, some end up with eating disorders because things were so strict.   These kids already have issues that set them up for food issues and I would hate there to be more things added that could increase the likelihood of something like that.

 

If putting on weight is an issue, I wouldn't pull anything they weren't actually allergic (IgE) to (obviously gluten as you have obvious issues there).  It's not a good age to pull things randomly without good reason.  I would trust a really REALLY detailed food log over any alternative testing because that is truly the ONLY way to dx ANY food issue.  (That's for actual allergies as well as things deemed intolerances).  I would caution using the word allergy as well because that's a whole different mechanism/issue as well which can muddy the waters. 


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#6 Andrea_P

 
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Posted 30 April 2014 - 07:00 PM

I know people have concerns with the acuracies of EVA screening and you are correct - these were not backed by blood RAST testing or scratch testing for her. I personally really believe in this form of testing and can confirm my own results through EVA and blood test that I went through. I am allergic to every nut (proven through blood and scratch testing)  except for almonds and without saying a word the EVA test said the same thing so I tend to believe it. My son also has allergy testing (injection testing) every three months for immune drops he is currently taking - the EVA test also came back with the same results. Allergies/intolerances aren't my big issue. I really am wondering if anyone has had problems with regulating sugar levels. I know that she has a problem with sugar. About 2-3 hours after eating something high in sugar she will turn white and be almost lathargic. I am curious if this is due to damage of her intestines or something else that is going on.

 

I don't want anyone to think I put her on a restrictive calorie diet. Believe me she gets plenty of choices but choices but doesn't want any of it becuase it is all new. She isn't a child that likes change. She is gaining weight so I know she is getting plenty of calories, we just cannot figure out the cause of the sugar drops or stomach aches. Maybe I am looking for an answer that just isn't there. I am tired of the fight and doctors thinking I am crazy. I just want to believe there is something better for her.


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#7 StephanieL

 
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Posted 30 April 2014 - 07:12 PM

He's getting allergy testing every 3 months?  I haven't ever heard of a board certified allergies doing them that frequently at all. Immunity doesn't change that quickly!

 

As for your DD, I hear you about wanting better for her. We are in a limbo state right now and I just pulled DS's files to go over his blood work yet again looking for ANYTHING.  I hope you can figure something out.  I would venture to guess though if her levels are still high there is a possibility that her digestion is still out of balance and causing absorption issues.   Have you tried a good probiotic?  Sounds like you are more holistic in your thinking so I'm sure you've gone there already ;) Also, hope you have Epis at the ready with you for your nut allergies!!


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#8 Andrea_P

 
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Posted 30 April 2014 - 07:32 PM

We have so many epi-pens it is insane. My daughter is also allergic to bee stings and manages to get stung every summer! Thank god we have never had to use any yet.  As for my son's allergy testing: he sees an ENT (the most popular one in our area). I assure you he is license and I trust him more than any of the other doctors - he is anything buy holistic as he did surgery on both my kids (tonsils and tubes). My son has a worse medical history than my daughter but that is a whole other forum :-) Anyway he gets testing every 3 months so they can make a new formula with new levels. It is very popular oversees but the states haven't been so quick to adopt it. He is two years in and can finally live without daily allergy medicine and one year hospital free so I think it is working well.

She has a probiotic in her mulit-vitamin and we have also tried the flora one that you mix with a liquid - she hates that one.

I guess we will just keep moving forward and hope something changes for the better. I just having to deal with a disease that  you cannot get instant feedback for. I am horrible at waiting so long to see if something is working.


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#9 StephanieL

 
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Posted 01 May 2014 - 04:44 AM

So are the shots for environmentals or food?  Very interesting. I keep hoping OIT will prove useful for foods but it's a long way off I'm sure. Glad you have a gaggle of epis! lol  We have them everywhere here at home and at school.  Do you have the $0 copay coupons being offered for them? If not it's a great plan and has saved us a ton! Works even if you have insurance.  

 

Again, I hope you can figure something out. It's so very frustrating for sure. As I said, we are in limbo land with my 7 yo who was dx at 3.5 :( Very frustrating for sure.


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#10 Andrea_P

 
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Posted 01 May 2014 - 05:23 AM

I always check the Epi-Pen site before filling a prescription :)  Avi-Q is another one that does free or 0$ copay too. 

 

He is only on the environmental for the drops (gets one drop under tongue 3x a day for the last 2 years). I really do wish the food ones would work and I am really hoping they figure them out soon since my son's nut allergy is pretty extreme. Since this is not approved by the FDA I do have to pay out of pocket for all of it. 

 

Here is hoping for a promising future and some answers. 

 

One other question: do you get your son tested for vitamin deficiencies? 


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#11 StephanieL

 
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Posted 01 May 2014 - 05:37 AM

I have in the past. His 0 (literally zero) Vit. D was what actually led to the Celiac dx for him.  We usually get vitamin checks from his endo 2 times a year. Just the "standard" D, B and a few others.

 

We've looked into the Avi-Q but the engineer husband of mine isn't ready to make the leap till it's been on the market for a while ;) I know it has the voice prompts too but I feel like anyone who has any ideas about how to administer epi, it's usually epi pens so I feel better with DS having those for now!


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