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-   -   DD14 gluten issue...I think. Any ideas? (http://www.disboards.com/showthread.php?t=3052079)

scottmel 01-22-2013 12:07 PM

DD14 gluten issue...I think. Any ideas?
 
Hello my DD14 was tested for celiacs disease and had her gallbladder, etc. ultrasounded. Blood Work, etc. Nothing seemed out of the ordinary to me on the blood work C reactive portein was <.02. I understand from different people that there is no one clear cut test for gluten.

In the meantime, I ran into a friend whose daughter had similar issues to mine. Aching stomach after eating, moodiness and foggy brain as DD calls it. Hard to concentrate. My friend mentioned a gluten free diet and I am giving it a try. So far DD says she feels better. Stomach hasn't hurt in 2 weeks!

Can anyone give me any good tips for websites or apps etc. to determine WHAT is gluten free? Obviously we don't have the allergy where it is life threatening so I THINK she can have something that maybe shares a facility where gluten products are manufactured but these products can't say "gluten free" b/c of this risk.

Any ideas on a good resource? I bought the dummies book for starters....
And fyi if it means anything here IgA is 145...Thanks!

disfan07 01-22-2013 12:31 PM

And IgA of 145 is actually in the normal range? Normal range is like 80-400 I think....something like that. I just know that mine is low....it's 40.

Did your daughter ever have an upper endoscopy to test for celiac? From what my GI said, that is a more definitive way to get a diagnosis rather than the blood tests.

I just went gluten free about 6 1/2 months ago because I developed a wheat allergy. It is actually not all that difficult IF gluten is the only thing you are avoiding. I am also allergic to eggs, nuts, oats, and many other things so it makes it more difficult.

Many products that are gluten free are now labeled as such. But what you have to remember is that something labeled as "wheat free" is NOT the same as gluten free. A lot of cereals are wheat free but still contain things like malt flavoring which is NOT gluten free.

There are a lot of sites that can direct you towards what is and is not gluten free. Gluten free products are more expensive so just be prepared for your grocery bill to jump but if t works it's worth it.

But if she has not had an endoscopy, talk to her GI because that needs to be done. But she cannot be gluten free for that test because it could come back a false negative.

And as for the may contain, made in the same facility, it all depends on tolerance levels of gluten. I know some people with celiac who have no problems with cross contamination and some that do. I usually avoid "may contain" just because mine is an allergy.

And that is a normal CRP as far as I know. Normal CRP range is 0-5 (at least it is if it is the same test I had)

If its stomach problems she is having, has she been tested for allergies? I know one of my main symptoms of allergic reactions (especially severe reactions) is intense GI pain. If she hasn't been tested it might be worth doing that.

clanmcculloch 01-22-2013 01:05 PM

The absolute easiest way to start a gluten free diet is with fresh foods. That mean unprocessed meats, fruits, veggies, dairy (I'd skip cheeses with cultures such as blue cheese for now as well as anything that has multiple ingredients on the label). This gives you time to figure out how to read labels.

You're lucky that these days there are a lot of gluten free products available on the market. This makes it so much easier and cheaper than it was even 10 years ago.

FYI: Wal-Mart makes all of the companies that produce their Sam's line of products clearly label for gluten.

I understand that these days there are apps available but we've got so many other food we avoid that an app just for gluten wouldn't make sense for that. Sites like celiac.com's message boards are great resources for products and tools. Back when I was first learning about gluten, I also found that the yahoo group Silly Yaks (say it out loud; isn't that cute?) was an amazing resource for information about products and tools. I haven't checked it out in several years so I don't know if it's still good or not, but back then it was amazing. The files section had great lists of products and even things like restaurant lists by city and seemed to get well maintained.

Low CRP is good. That means very little inflamatory process going on.

When you say her IgA is 145, do you mean total IgA or a specific antibody?

I know you didn't ask, but I've read very mixed reviews (I've read really good and really bad) of BC CL gluten free. The CS options at BC/YC for gluten free are minimal. There are some including Babycakes products being available, but not a lot.

KristenFNJ 01-22-2013 03:04 PM

I would have the same questions regarding the blood tests. If her Total IgA Serum is 145, that's normal. If her tTg IgA result is 145, that's high positive for celiacs. I would try very hard to get this whole panel of blood tests done as soon as possible. And gluten ingestion is necessary. I would even go ahead and try to get the endoscopy/biopsy on the calendar asap because her symptoms are so uncomfortable, so compatible with celiacs, and clear up when going gluten free. I know it sucks to think about putting her back on gluten, but it's REALLY REALLY important to get the diagnosis correct. Celiacs have a lot more than just stomach trouble... because the intestines get damaged and nutrition is not absorbed, you have to be tested for anemia, bone loss, vitamin deficiencies, and her growth could be jeopardized. And every time the autoimmune response is activated, the chances of other, scarier conditions increase (hence the need to avoid cross contamination is very serious). So if you move forward with the thinking that cross contamination won't be harmful she could end up really sick. :(

The following is usually considered to be a complete celiac panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

The last test is a control to make sure that normal amounts of IgA are produced, otherwise the IgA results aren't valid, and the IgG results (which are not as specific to celiac's) are the main indicators.

(HLA-DQ2 and HLA-DQ8 gene tests for celiac disease, if the blood tests are truly inconclusive this is a different way to get at some information-you'd know for sure if she's not a carrier, it's not celiacs)

Some good sources for info:
National Foundation for Celiac Awareness: www.celiaccentral.org
www.celiac.com (message board, lots of info, gf food mall, and sub to the journal of gluten sensitivity)

clanmcculloch 01-22-2013 03:36 PM

I disagree that the diagnosis matters. Both of my girls and I all test negative for every type of celiac test (all the blood ones and endoscopy). I even put DD14 back on gluten for a couple months to make sure we got accurate tests. What a waste. We all test negative. We all have autoimmune reactions to gluten. Celiac is only one type of gluten intollerance. If she's responding as drastically as she is to being gluten free then you have your diagnosis. Granted, we haven't bothered with the genetic or peptide tests but I don't see the need. We know we have to be gluten free. Cross contamination is as much of an issue for us as it is for "true celiacs" so again, diagnosis is irrelevant.

As a non-celiac, I am severely vitamin B12, D, A and zinc deficient because of years of mis-diagnosis and therefore continuing to ingest gluten. Both of my girls are D deficient and one is borderline B12. Figuring out that you have to be gluten is free is absolutely imperative. The label for why is not IMO and in fact can be mis-leading because of the misconception that those who are gluten free but do not test positive for celiac can be more lax and not worry about cross contamination. By severely deficient, I'm talking about needing B12 shots weekly in order to keep neuropathies under control, needing 5000 UI daily of D to keep away muscle spasms and ending up with intermittent night blindness at one point from the A deficiency. Oh, and I was diagnosed with osteopenia in my early 30s because of (we assume) the D deficiency. This is what the gluten damage did to my intestines. Again, I don't have celiac. Both of my kids had growth issues as well. Again, not celiac.

ILUVALASKA 01-22-2013 11:36 PM

I went gluten free in JUly after a year of bloating, stomach ache, diahhrea, and cramps. Since July, I have lost 20 pounds and have no GI issues. I eat:

eggs
yogurt
gluten free cereal or oatmeal
salads
chicken, beef,turkey fish
fruit
veggies
nuts, popcorn
rice, potato, and gluten free pasta
For sweets I buy gluten free cookies or eat frozen yogurt

I feel so much better! By the way, I have not been to the doctor or had tests. The test is what happens when I eat gluten! I feel terrible!

disfan07 01-23-2013 02:01 AM

Quote:

Originally Posted by ILUVALASKA (Post 47278281)
I went gluten free in JUly after a year of bloating, stomach ache, diahhrea, and cramps. Since July, I have lost 20 pounds and have no GI issues. I eat:

eggs
yogurt
gluten free cereal or oatmeal
salads
chicken, beef,turkey fish
fruit
veggies
nuts, popcorn
rice, potato, and gluten free pasta
For sweets I buy gluten free cookies or eat frozen yogurt

I feel so much better! By the way, I have not been to the doctor or had tests. The test is what happens when I eat gluten! I feel terrible!

Personally, I would still advise to get some testing dne not for celiac or gluten intolerance but more for nutrient and vitamin deficiencies. If someone has celiac or any sensitivity to gluten they can have issues with malabsorption. So things like B12, folic acid, iron, vitamin D, etc can be abnormal even if the GI symptoms have disappeared.

I think it's more important to know about hose things than getting an actual celiac diagnosis.

clanmcculloch 01-23-2013 09:45 AM

What disfan07 said. Like I said above, I don't have celiac but I do have permanent damage to my intestines leading to many deficiencies. These deficiencies are impacting all sorts of areas of my health and need to be treated beyond just my dietary changes. I asked for my kids to be tested for these kinds of deficiencies as well and I'm glad that I did because both are deficient in D and one is deficient in B12 and thanks to testing they can be properly treated in addition to their dietary changes.

ILUVALASKA 01-23-2013 11:14 AM

Hi Disfan-

Because I am in treatment for thyroid, I do have a complete bloodwork done twice a year. She checks everything- D, Calcium, B12, etc. But you are right-those things should be checked.

disfan07 01-23-2013 12:07 PM

Quote:

Originally Posted by ILUVALASKA (Post 47281570)
Hi Disfan-

Because I am in treatment for thyroid, I do have a complete bloodwork done twice a year. She checks everything- D, Calcium, B12, etc. But you are right-those things should be checked.

:thumbsup2 sounds like you are on top of it. It sjust something I always mention becasue I am B12 deficient but it took two years for anyone to check and I suffered some permanent damage in the process.

I dont have gluten sensitivity (going GF hasnt helped my GI symptoms at all....or my B12 absorption) but its because of other various issues

scottmel 01-23-2013 12:16 PM

Thanks from op!
 
You guys are the best! I am the original poster and my head is swimming!!

Ok after the round of testing that DID look for Celiacs - which came back negative so I thought no more of it. However the blood work was the CBC panel, Hemotology panel and Immunolgy small panel. Ca was measured at 9.7 - is this calcium I think? No mention of B6 or B12 or Iron so that is a very interesting thought to have those looked at.

I hesitate to have her scoped at this point b/c not sure what it would gain me. If then felt her celiacs (spelling?) test was negative I am of the thought process she does not have that but COULD have a gluten sensitivity which is being proved correct by having no gluten and thus feeling better.

What are my next steps:

1. Iron, B12, B6 tested - can do that
2. Do you agree to NOT scope b/c what will be gained by scoping?
3. Is it "dangerous" to not have gluten in your diet?
4. Keep her gluten free for ---- how long? Do I slowly introduce a little gluten back to see how she reacts? I guess I am thinking and believe me I am no doctor, that if you don't read positive for anything on this small panel then you don't have celics therefore your gluten threshold isn't over the top
5. Allegy testing - would this show wheat? If so why go thru the celiacs testing etc. wouldn't one just check for wheat allergy first?

thank you!

scottmel 01-23-2013 12:19 PM

Quote:

Originally Posted by KristenFNJ (Post 47273102)
I would have the same questions regarding the blood tests. If her Total IgA Serum is 145, that's normal. If her tTg IgA result is 145, that's high positive for celiacs. I would try very hard to get this whole panel of blood tests done as soon as possible. And gluten ingestion is necessary. I would even go ahead and try to get the endoscopy/biopsy on the calendar asap because her symptoms are so uncomfortable, so compatible with celiacs, and clear up when going gluten free. I know it sucks to think about putting her back on gluten, but it's REALLY REALLY important to get the diagnosis correct. Celiacs have a lot more than just stomach trouble... because the intestines get damaged and nutrition is not absorbed, you have to be tested for anemia, bone loss, vitamin deficiencies, and her growth could be jeopardized. And every time the autoimmune response is activated, the chances of other, scarier conditions increase (hence the need to avoid cross contamination is very serious). So if you move forward with the thinking that cross contamination won't be harmful she could end up really sick. :(

The following is usually considered to be a complete celiac panel:

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA

The last test is a control to make sure that normal amounts of IgA are produced, otherwise the IgA results aren't valid, and the IgG results (which are not as specific to celiac's) are the main indicators.

(HLA-DQ2 and HLA-DQ8 gene tests for celiac disease, if the blood tests are truly inconclusive this is a different way to get at some information-you'd know for sure if she's not a carrier, it's not celiacs)

Some good sources for info:
National Foundation for Celiac Awareness: www.celiaccentral.org
www.celiac.com (message board, lots of info, gf food mall, and sub to the journal of gluten sensitivity)

Thanks Kristen! Seems like my panel is almost a screeming. IgA 145 - that is all it says. Tissue Transglutaminase n 10.

Then the rest seems for Immune autoimmune testing ABS, panel etc. Gee you can tell my medical degree is among the missing! LOL! The only numbers in red are Amylase and Lipase and Lymphs....

scottmel 01-23-2013 12:21 PM

Quote:

Originally Posted by disfan07 (Post 47278837)
Personally, I would still advise to get some testing dne not for celiac or gluten intolerance but more for nutrient and vitamin deficiencies. If someone has celiac or any sensitivity to gluten they can have issues with malabsorption. So things like B12, folic acid, iron, vitamin D, etc can be abnormal even if the GI symptoms have disappeared.

I think it's more important to know about hose things than getting an actual celiac diagnosis.

Excellent advice. I don't think her tests show any of these so I will follow up with her PCP for sure.

clanmcculloch 01-23-2013 01:09 PM

I hate the "range" for the tTg antibody test. In a person who doesn't react to gluten, why would you have ANY antibodies? I don't understand why it's only clinically significant at 17 (I think that's the lowest number for a celiac diagnosis). The purpose of doing the total IgA is because the tTg test is useless in somebody who is IgA deficient and the frequency of IgA deficiency is higher among celiacs than the general population so it's important to check.

I wouldn't bother with the scope if she's improving with a gluten free diet. IMO it's only worthwhile putting her through that if she still has symptoms after 6 months gluten free at which time the purpose is to see if something else is going on (6 months is enough time for gluten damage to completely heal if that was the only problem and there isn't permanent damage like there is with some of us who went undiagnosed for over 30 years of our lives).

I've also come back deficient in D, A and zinc in addition to the ones you've mentioned. I've also read the suggestion of vitamin K being checked.

ETA: I just looked it up and according to the Mayo Clinic, 10 is positive. http://www.mayomedicallaboratories.c...rpretive/82587

scottmel 01-23-2013 02:30 PM

Quote:

Originally Posted by clanmcculloch (Post 47282802)
I hate the "range" for the tTg antibody test. In a person who doesn't react to gluten, why would you have ANY antibodies? I don't understand why it's only clinically significant at 17 (I think that's the lowest number for a celiac diagnosis). The purpose of doing the total IgA is because the tTg test is useless in somebody who is IgA deficient and the frequency of IgA deficiency is higher among celiacs than the general population so it's important to check.

I wouldn't bother with the scope if she's improving with a gluten free diet. IMO it's only worthwhile putting her through that if she still has symptoms after 6 months gluten free at which time the purpose is to see if something else is going on (6 months is enough time for gluten damage to completely heal if that was the only problem and there isn't permanent damage like there is with some of us who went undiagnosed for over 30 years of our lives).

I've also come back deficient in D, A and zinc in addition to the ones you've mentioned. I've also read the suggestion of vitamin K being checked.

ETA: I just looked it up and according to the Mayo Clinic, 10 is positive. http://www.mayomedicallaboratories.c...rpretive/82587

Oh geez Trudy talk me down off the cliff over here. Ok so basically here is what I understand from you. That what she has on the tissue test is a weak positive. Does this change ever in life? Once your system calms down do these numbers adjust? Her overall IgA is 145 thus normal. So would you think keeping her gluten free would lowe the Tissue Transglutasminase number? Should the doctor have talked to me about any of this? Would a allergy test show an allergy to wheat?

Can she outgrow this intolerance? you say the damage can be undone in 6 months. What damage? And how do you keep it from climbing? She is asian so no info on ancestory, etc but her childhood and still now she has SEVERE dry skin and use to have terrible itchy dermatitis rashes and chronic nosebleeds. Over the years this calmed down significantly.

I can't thank you enough for your help.


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