My heart is breaking all over again

[still..hopeful]

Alyssa had her endo yesterday. She hasn't ran low since she came home from the hospital three months ago but she woke up at 58 yesterday. I had to give her glucose tabs to bring it up until we got to the hospital. They blew her vein twice putting in her IV. The numbing cream did not seem to work its magic! If that wasn't enough to cause a melt down, having to walk with her to the end of the halllway and kiss her bye as they wheeled her away did. Luckily she was on "happy juice" but I wasn't. The dr came out after ten minutes and showed us the pictures. She had positive signs of celiac. My heart broke all over again. Now I have to take more things away from her and try to find things to replace them. We can't meet with the dietician until 2/5. What do I do until then?? I have found a few things that say gf but have no idea about the rest. I am in need of bed time snacks. Alyssa always ate yogurt and grahams and we did not cover it with insulin. It was a great snack that covered her through the night. I know she can still have yogurt but I don't know what to put with it? I am open to any ideas. Help before I have a break down instead of a melt down.:D

[aklap]

Hi Still,

Sorry to hear about the dx. Have the docs discussed testing others in your family? Hopefully they did. I know it's tough to deal with right now. Take a deep breath...things will be OK. You've got some learning ahead of you, just take it one step at time. "A journey of a thousand miles begins with a single step." You have just started your GF Journey.

I won't lie, it will take some work. You will make mistakes. Don't beat yourself up over them - learn from them - and move on. You will be so frustrated you'll want to scream! Please don't - you'll scare the others in the grocery store! ;) It took me 3 months before I was comfortable with my food choices.

Surprisingly, there are more things that she CAN have than she CAN'T have. There's a lot of mainstream food that is GF - you just need to know how to find it. The 1st and best thing to do - cut out all the processed food. Get "whole foods" - foods that have little to no processing to them. Fresh fruits and veggies, plain unmarinaded meat, fish & poultry.

Please, check out the GF Diet Boot Camp (http://forums.glutenfree.com/viewtopic.php?t=1309). There's A LOT of helpful links in there that will make the road much smoother for you and your DD.

You'll also want to brush up on some info before you see the dietitian. Be aware that not all dietitians are familiar with the GF diet (GFD). You might want to ask how many celiac clients they have. Check out Dietitian's Gluten Free Resources (http://forums.glutenfree.com/viewtopic.php?t=3959). Lots of great stuff here too! Don't miss The Celiac Diet #6 - Kids & the Gluten Free Diet and The Celiac Diet #7 - Combining Diabetes and Gluten-Free Dietary Management Guidelines.

You'll also want to find a local support group. They will be very helpful in find food, figuring out the diet and just the all around support - people that know what you're going thru. Please you might find some other celiac children.

See if there's a local R.O.C.K. Group - Raising Our Celiac Kids (http://www.celiac.com/articles/563/1/ROCK-Raising-Our-Celiac-Kids---National-Celiac-Disease-Support-Group/Page1.html)

Support Group Locators (http://forums.glutenfree.com/viewtopic.php?t=578)

Local Support Groups Websites (http://forums.glutenfree.com/viewtopic.php?t=640)

Gluten Intolerant Group's PDF on Celiac, Diabetes and Me! (http://www.gluten.net/downloads/print/diabetes-celiac.pdf)

Gluten Intolerant Group's PDF - One Step at a Time (http://www.gluten.net/downloads/print/One%20Step%20at%20a%20Time.pdf)

Fear not - there are GF Graham crackers for purchase (http://www.glutenfree.com/item_detail.aspx?ItemCode=957054) or you can make them yourself - like this one (http://forums.glutenfree.com/topic6114.html) or this one (http://forums.glutenfree.com/topic3824.html[/url).

[hrermgr]

I totally understand how you feel. I felt the same way when T was diagnosised. More stuff she "can't" have. But we've found some very good GF products already and found that many of the foods we already had were GF. Our dietian (who we met with last week) said to not look at what T can't have but what she can have and that's a lot: all fruits and veggies, all meats and fish, nuts, pototoes, rice, most diary, etc. Yes, the bread and pastas are still a challenge but we continue to work on this. And processed foods are tricky but it gets easier. We've found many good GF foods at our local grocery stores--we asked about GF and natural foods--and Trader Joe's is a good option, too.

Trust me, it's not as terrible and overwhelming as it feels right now. It gets better. And our whole family is actually eating better and we've only been GF for 3 weeks!

A couple of other words of advice: buy a new toaster only for GF stuff; toss out wooden cutting boards and replace with plastic; get your child their own margerine and peanut butter tubs. Make it fun and special for her. (T got a Hello Kitty toaster from Santa for Christmas and she loves it! I wish I could say it's high quality but that's another story.)

Good luck. Really, it does get better.

[still..hopeful]

Thanks for all the wonderful advice. It is very overwhelming right now. I tried her on her first gf breakfast yesterday..or I thought it was g.f. We had bought some gf peanut butter and g.f. jelly to try to see if she would eat it. Well, we forgot we had been making sandwiches on regualar bread so we had contaminated both. I am scared of the whole cross contamination thing. I think I have gone through a whole roll of paper towels in two days. I don't want to lay anything down on the counter.
I have joined the celiac/diabetes mailing list recently. I have received a lot of great tips from other parents. Nemours in Jacksonville, Fl is starting their first celiac support group. My husband and I are going to go. It is for anyone that has celiac so a lot of the children may not have diabetes too.
I asked her gastro about getting anyone else in the family tested and he told me that he would not worry about my husband or myself but would suggest testing her younger brother in the future. What do you all think? I thought celiac was genetic. Should we get tested as well? How long does it take to clean out your system from gluten?

[aklap]

Books from Danna Korn (http://www.glutenfreedom.net/) are good. I think "Wheat Free Worry Free" is a must for all those touched by Celiac Disease [this goes for the loved ones that don't have CD too ;)]. I lent mine to my Mother, as she wasn't understanding my dietary needs.

It covers many aspects of day to day life. It covers cross contamination issues too.

Danna's Books at Amazon (http://www.amazon.com/exec/obidos/search-handle-url/103-6648717-1065406?%5Fencoding=UTF8&search-type=ss&index=books&field-author=Danna%20Korn)


Heavens yes, you and hubby need to be tested too! This is a genetic disease, so it has to come from somewhere. Keep in mind that CD can present with little or no outward symptoms.

Allow me to share a personal story with you. About 1 month about a friend of mine called me. She told me that her niece was just dx'ed with CD and asked if had any info I could offer up . I told her CD was genetic and told her family members need to be tested too. I also told her about variability of symptoms. I just happened to pick unexplained anemia as 1 possible sx that often goes unnoticed. She said "Oh my gosh, it's funny you mention that because I've had that for years...as well as gastro problems that I don't often talk about". I encourage her to get tested. She's a Physical Therapist at hospital so she took me up on my encouragement. Her tests for CD came back positive, her liver function tests were off - they 1st thought it was Hepatitis. They are now expecting that the liver tests are off due to CD [which I know can happen]. She has been scheduled for a biopsy. I have not heard from her to know when she has it.

Screening for celiac disease in family members: is follow-up testing necessary? (http://www.ncbi.nlm.nih.gov/pubmed/17380406?dopt=AbstractPlus)

1: Dig Dis Sci. 2007 Apr;52(4):1082-6. Epub 2007 Feb 16. Links

Goldberg D, Kryszak D, Fasano A, Green PH.

Department of Medicine, Columbia University College of Physicians and Surgeons, 161 Fort Washington Avenue, New York, NY 10032, USA.

[B]Celiac disease is a genetically determined intolerance to gluten that results in villous atrophy in the small intestine. Because celiac disease occurs in families, relatives of affected individuals are tested for the disease. However, there are no evidence-based guidelines for when, or how often, to test relatives. Our goal was to determine if one-time screening of relatives is sufficient. Of 171 family members with an initially negative endomysial antibody who were tested on more than one occasion, 6 (3.5%) were positive on repeat testing. The average time to seroconversion was 1.7+/-1.2 years (range, 6 months-3 years 2 months). Only one of the seroconverters had diarrhea; the remainder were asymptomatic. None of the patients had a change in symptoms between testing. We conclude that one-time testing for celiac disease among families with affected members is insufficient. Repeat testing should occur irrespective of the presence of symptoms.

PMID: 17380406 [PubMed - indexed for MEDLINE]

How long does it take to clean out your system from gluten?
If you asking how long does it take for you to become symptom free - it depends. For some it can happen in days/weeks, others weeks/months. There is a withdrawal period. Gluten does have addictive properties. Expect emotional flares during this period.

[momx2withdiabetes]

Oh boy I so remember the paper towels and wiping everything ddown and rewiping . We personally made a choice to have the whole house gluten free it was just easier for us . We have other young kids and they would forget and touch but every house hold is different and it took me a ehile to come to this conclusion. I have two kids with type one so we really have to count carbs too ! so here are some great snacks we have found that are pre counted carbs for school etc.

Walmarts brand Great value ( now takes the guess out of it for us ) it will say gluten free even if it is processed on a line so it so it could be cross contamintated it will not be gluten free and will state
items I have found scallop potoes , smiles fruit snacks, parmesaen cheese , corn tortillas

whole foods- has "Ians" prepared cookie bites carbs counted gluten free so good : ) kids love them.

Gluten Freeda frozen cookie dough for school emergencys : ) 22 carbs ; ) per cookie bake one at a time if you want oh so yummy can't tell the difference.

Gluten free pantry makes a bread mix that that we tweak and really like now you might not be ready for it yet .
Bobs red mill also makes a chocolate cake mix that I add tweak a little and people love my cake even non celiac theres never non left " dead serious "

WEbsite kinnickkick also has nummy stuff to this of course is the junkier stuff I know you know the fruits and veggies I'm giving you alternatives to school stuff so they don't have to feel different :)
They have animal crackers , chocolate chip muffins, waffles, graham crackers and graham crust . really good stuff oh yeah and oreos / CARBs CARBS CARBS but smiles smiles smiles : )

look into your local food coop as it will be cheaper to buy in bulk test it first bulk is cheaper: )

Things will get easier I so remember the feeling and I'm sorry its sad for them but really in the long run we all eat healthier but I have learned the snacks to keep on hand in case of a low : ) and there really is lots : )

We go camping and have graham crackers , we went to Hawaii this year and stayed a week I packed almost all the food for family of five. ( except fruits veggies )

[still..hopeful]

I bought Alyssa some waffle and pancake mix from the company Maple Grove. It clearly states gluten free in big letters on the front of the box. When I was reading for carbs, I noticed the consumer alert at the bottom of the label stating it was manufactured in a place that processes soy, tree nuts, and wheat. It is ok or not? I'm confused.:confused:
Angie

[still..hopeful]

Thanks for the ideas. I have discovered Walmart's brand. It is great since we are rookies at this. I think coming up with snacks for school is the hardest. Alyssa is in Pre-k and only there for two hours. I try to send snacks that we do not have to cover with insulin. That has been a challenge. Have you found a pudding that is gf?

[Riley'sMom]

hunt's snack packs are GF! the no sugar added ones are only 8 carbs!
good luck. we are fairly new at this too (september).

[momx2withdiabetes]

Kozy shack made with splenda is 11 ( good for p.e. days ) they say on the box gluten free.
Peaches in splenda by Del mOnte is 6 also .

sounds like your doing a great job :)
Keep up the great work to all you newly diagnosed.

Safeway has a list too ! if you call they will send you I take these with me while shopping plus keep a eye on ingredients to make sure it doesn't change.

If I can help at all please feel free to pm me : )

[My_Dana]

Hi -

Dana was at the Endo today, and had blood work last visit for celiac.
The blood work results were -

- The “anti-gluten” antibodies are the anti-gliadin IgG and IgA. Normal
- The “anti-self” antibodies are anti-endomysial IgA and anti-tissue transglutaminase (tTG). 50 (units?)

I know the tTG can be elevated in T1, so can be a false positive.
Have not done any biop...yet.
The Endo said she has had several elevated tTGs in other kids, with only one confirmed case.

Anyone with similar results and an "negative" diagnosis?
Would be greatly appreciated...Thanks!:)

[still..hopeful]

Are glucose tabs gluten free?

[Riley'sMom]

the CVS brand is, my husband called about those and the CVS gel. not sure about other brands.

[Twinklet]

Hi -

Dana was at the Endo today, and had blood work last visit for celiac.
The blood work results were -

- The “anti-gluten” antibodies are the anti-gliadin IgG and IgA. Normal
- The “anti-self” antibodies are anti-endomysial IgA and anti-tissue transglutaminase (tTG). 50 (units?)

I know the tTG can be elevated in T1, so can be a false positive.
Have not done any biop...yet.
The Endo said she has had several elevated tTGs in other kids, with only one confirmed case.

Anyone with similar results and an "negative" diagnosis?
Would be greatly appreciated...Thanks!:)


We were told at camp that a tTg below 20 is almost assuredly negative, and that anything over 100 is almost always positive. The numbers between 20 and 100 are the "iffy" areas and an endoscopy should probably be done to determine whether there is villi damage.

But I have to admit that a 50 seems like such a gray area, I would probably re-test in 6 months and see if the level has changed.

[aklap]

Anti-tissue Transglutaminase Antibody (tTG), IgA and/or
Anti-endomysial (EMA)
An indicator of villi damage [slight damage is not always detected].
These tests are highly specific to CD.
However, autoimmune diseases can skew the results of the tTG test (http://www.celiacdisease.net/assets/pdf/CDCFactSheetsAntibodyScreening3.pdf)

It is important to note that some people with Type 1 Diabetes, Hashimoto’s thyroiditis and autoimmune liver conditions can have a falsely positive tissue transglutaminase test. For this reason, it is important that tTG test results in people with these conditions be checked with the EMA test. The physician may nevertheless want to obtain an intestinal biopsy if clinically indicated, even if EMA are negative.


Ed, do you know if they ran the EMA tests too? This would be a way of cross checking the tTG test.

[My_Dana]

Hi -

I did ask about the tests and the doctor only mentioned the tTG and anti-body for gluten (actually the gliadin component of gluten).
I would think they would have also done the EMA, but you never know unless you specifically ask.

She did mention that over the past year of "all" her patients (not sure how many "all" is), several had elavated tTGs, and only 1 was confirmed celiac.
Made us feel a little better, but by no means out of the woods.

So the actual tTG was 52 and the other was "normal".
Yes this is the gray zone. And we did order another test. But probably only the same as before.

I'm thinking, I may not want see a change in the tTG.
That would imply to me that it is potentially elevated from the T1 alone.

[aklap]

In many cases, docs will not order the full celiac panel. They'll only order the tTG. Unfortunately it doesn't give you the full picture.

You are correct - you don't know until you ask. I have found this to be true for numerous people. They get copies of lab work and office note and find all sorts of things that were missed or inaccuracies. It never hurts to be proactive.

I don't remember what Dana's sx's are, but if she continues to have them - after the docs say "No Celiac", please consider doing a GF trial.

Gluten can and does cause problems outside the realm of the gut. It can also cause problems in the gut without villi damage.

Don't be too quick to absolve gluten ;)

Good luck to you and Dana!