Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

josmom

Ttg Levels Higher Than When Diagnosed

Recommended Posts

My daughter is a Type 1 diabetic (diag 2/07) she was diagnosed with Celiacs in Dec 07. She rarely suffered from any symptoms, occassional stomach ache or gassiness. Her antibody test was 205 at diagnosis, she has been gluten-free for over a month and was retested. Her antibody levels (TTg I believe) are now at 287. She now has stomach aches and sore throat quite often. Doc diagnosed with acid reflux, on Zantac but not noticing a big difference. I have been as vigilant as I can be about gluten-free (not to say I haven't made the occassional slip up ie piece of candy or the such), but my daughter isn't cheating as the doc asked. I am so upset, how can she be higher now that when she was on a non restricted (let me take that back she's on a restricted diet with the diabetes) gluten diet. Has anybody got any ideas? Her blood sugars are all over the place too, when it rains, it pours

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


I wish I could remember where I read it, but I read somewhere that sometimes antibodies can go up at first before they start to go down.

Really it's early days yet on the diet for your daughter, I think you just need to stick with it for longer. Lots of people here have reported ups and downs during the first year or so, and also blood sugars being all over the place. It's a major adjustment for her body. I hope some of the people here with both celiac and diabetes will chime in with their experiences.

Pauliina

Share this post


Link to post
Share on other sites

Try taking your daughter totally off sweets of all kinds, including fruits.

This comprehensive article explains how the foods we crave most are the foods most likely to make us ill.

http://www.newscientist.com/article/mg1231...ome-foods-.html

The gut turns starches into sugars which it releases into the bloodstream. It's prophetic and profound. People who get diagnosed with diabetes just wait for their doctor to say the problem isn't just eating sugar, it's eating ALL starches .......to say you can't quit eating ALL starches, so eat some starches and some sugars.

The same is true of celiacs. These pages are filled with two kinds of posts:

1. Give me some recipes for making yummy sweets without gluten.

2. I'm on a gluten-free diet, and I'm not improving. What's wrong?

The following web page is a writeup of the 2003 study which shows that critical portions of proteins on the surface of the common gut fungus candida albicans are identical to the critical portions of gliadin, the active protein in wheat gluten.

http://www.denvernaturopathic.com/news/celiac.html

The theory behind this connection says that we develop an immune response to gluten while attempting to fight off candida infections. So the diet method of fighting this protein would have to eliminate wheat AND the substances which cause candida to proliferate.

With candidiasis, the problem is not sugar in the blood. The problem is sugar in the stomach. Candidiasis and gluten are both capable of causing diabetes. So the operative diet would eliminate gluten AND sweets .......ALL sweets including fruit.

Interpreting the following site shows that candidias symptoms are a subset of celiac symptoms .....short of evaluating autoimmune spinoffs like diabetes.

http://candidapage.com/

The following page shows that the way to starve out candida is to eliminate sugars and sweets.

http://candidapage.com/candiet.txt

I'll add what I've read from other sources and confirmed by trial. Candida albicans has a dormant state which allows it to survive oxidants in the gut .....like dyes, chlorinated water and aspirin-like salicylates. These oxidants kill off candida's beneficial competitor microorganisms. So take them out of the diet, and add in some probiotic like plain live yogurt, and some vitamin C and B complex.

I'm no physician, but these tactics work for me. I hope they work for your daughter. If they don't, there's no apparent cost.

..

Share this post


Link to post
Share on other sites

I'm not sure why the tTG would have gone up, but one month is awfully early to retest. Most don't retest until 6 months or a year. We retested at a 6 months. Don't be discouraged, keep at it. I would double check all her medications/vitamins/shampoo/soap/etc. You might want to consider going dairy free on a trial basis to see if it helps. At a minimum, she should probably be on a lactaid chewable as many celiacs are lactose intolerant until they have healed.

I believe I recall a conversation amongst diabetic celiacs that included a discussion about the blood sugars being all out of wack for awhile when first going gluten-free . . . partly because the foods (breads) are a little different but mostly because the intestine is healing and therefore absorbing/processing more of what they are eating. So if this is the reason, it would be indicating she has started healing, but also it will also require more effort to stay on top of the diabetes for the entire healing process.


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

Share this post


Link to post
Share on other sites

Have you checked all meds and supplements she is on? You need to do this with the maker to be sure, the pharmacist can give you the fact sheet with a number to call as the drug ingredients will give no indication on gluten statis. Generics are really risky as they can change binders at will.

Is she doing any arts and crafts at school? Clays, glues, pastes, paints all can be gluten sources.

Is your home gluten-free? If you can make it so it will help keep her safer at home.

Have you checked all toiletries, shampoos, lotions, even pet foods can be a source of CC. It is very hard at first to ferret out all the sources.

Also some of the artificial sugar alcohols can be a problem. They will state that they are gluten free by processing but someof us will react anyway. Is she consuming diabetic candy that contains it? The following is from a site that uses maltitol.

"Maltitol is derived from wheat, the gluten is extracted ... Maltitol is a member of a family of sweeteners known as sugar alcohols "

Her BS should stablize once she is healed a bit on the diet. It can take a while for the healing to set in but it will. I was diagnosed with Type 2 diabetes during a particularly bad glutening. Because the meds they gave me have a black box warning with symptoms the same as a severe glutening I decided to try and use dietary control. I was told to stick twice a day, well I stuck 9. Before and after every meal and on waking and before I went to sleep. By doing this I was able to see how much what I was eating was really effecting the sugar. Something I am sure with a Type 1 you are doing already. After over a year of this we realized that the only time I had high sugars was when......you guessed it I was glutened.

Long story short, the effects of a glutening like any illness, will effect BS control. Once she has gotten the toxin totally out of her system things should stabilize.

I hope she improves soon, you have come to a great place to get info on all the stuff that the doctors don't think to tell us.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

First, one month gluten-free is probably not long enough to see the antibody level drop appreciably. Most celiac centers recommend follow up testing at 6 months and one year. Did you MD say why you are doing follow up testing so soon?

http://www.celiacdisease.net/assets/pdf/celiac disease...lowUpTests7.pdf://http://www.celiacdisease.net/assets...lowUpTests7.pdf

How often should follow-up

testing occur?

New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis.

Secondly, the fact that your DD has diabetes can cause her TtG antibodies to be elevated. I do not know how this mechanism works, but it may be worth following up on. Even moreso since you say her blood sugars are not under good control and you believe she has not been cheating on her diet.

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

Causes of false positive celiac serologic tests

anti-tTG has been reported to be positive in the presence of liver disease, especially cirrhosis [33], diabetes [34, 35] and severe heart failure [36], as well as arthritis [37] and various autoimmune disorders [38].

Hope this helps.


-Colleen

Dx 8/05 via bloodwork and biopsy (total villous atrophy)

13-year old son Dx 11/05 via bloodwork and biopsy

Daughters (16 and 5) have tested negative via bloodwork

A woman is like a tea bag - you never know how strong she is until she gets in hot water. - Eleanor Roosevelt

Share this post


Link to post
Share on other sites
First, one month gluten-free is probably not long enough to see the antibody level drop appreciably. Most celiac centers recommend follow up testing at 6 months and one year. Did you MD say why you are doing follow up testing so soon?

http://www.celiacdisease.net/assets/pdf/celiac disease...lowUpTests7.pdf://http://www.celiacdisease.net/assets...lowUpTests7.pdf://http://www.celiacdisease.net/assets...lowUpTests7.pdf://http://www.celiacdisease.net/assets...lowUpTests7.pdf

Secondly, the fact that your DD has diabetes can cause her TtG antibodies to be elevated. I do not know how this mechanism works, but it may be worth following up on. Even moreso since you say her blood sugars are not under good control and you believe she has not been cheating on her diet.

http://www.celiacdiseasecenter.columbia.ed...C05-Testing.htm

Hope this helps

Thanks for all the wonderful advice. I asked the doctor to do a antibody test. I wanted some confirmation that we were going in the right direction. I didn't expect a 0 level but I was shocked that it was higher. The doctor said I could come back in another month. I wonder if I should should give it more time. I don't know if I can handle the anxiety of watching the numbers increase. There just seems to be too much to worry about.

Share this post


Link to post
Share on other sites