DD14 gluten issue...I think. Any ideas?

[scottmel]

Hey, sorry I missed the in-between posts with the mayo link! I have a feeling that there must be some sort of scale between the two but I'm not able to research it right now, this is what I use as a reference for IgA results. I'm very interested in the mayo page and want to learn more about it, thanks for the link! When DS1 was tested, his IgA tTG was 100... so think it must be a matter of a decimal point or something like that!

http://www.arupconsult.com/Algorithms/CeliacDz.pdf

Also meant to say, I have a friend who's allergic to gluten, (also negative for celiac), her allergy was confirmed through allergy testing (at which time she found out she's also allergic to milk, eggs, tomatos, and a few other things... fun times!). I don't know much about allergy testing, but I do remember that each allergen had a "ping" rating, I think the scale was from 1-5, with 5 being the most allergenic. A test like that could help narrow down if she has an intolerance for gluten in a typical allergy sense, and how severe the intolerance is for determining how strict you need to be with cross-contamination, etc...

Love that flowchart! But it is confusing to me b/c my IgA shows 145 (DD14). How do you know how to intepret this? Surely 7.5 as you say is a decimal point missing or something?

At this point in the game, would you pursue anything else or just be gluten free and see how it goes?

 

[scottmel]

That's great! 19 or less is negative I admit I didn't interpret the original post that the test results were difinitive-the 145 IgA number made me nervous!

I do agree that with the solid negative blood test I might not persue celiac's any further.

So you are ok with an IgA of 145 for 14 year old? From my google attempts this appeared normal but then your comment about being nervous got me nevous!

Unfortunately there is no info on birth parents, etc. so clueless on anything of the nature there. I wrote off the moodiness to teen behavior but the double over stomach sick for DAYS on end (no throwing up just severe pains) that would go in spurts for days then disappear and come back for days etc. caught my attention...

 

[scottmel]

Unfortunately, it's highly unlikely that she'll outgrow it. Fortunately, the world we live in today, unlike even 10 years ago, is relatively easy to live in gluten free. Once she's been symptom free (and I mean completely symptom free) for several months, you can try a gluten challenge and see how she reacts. Personally, since she had a 10 for the tTg, I think she needs to be gluten free for life because I do consider that to be diagnostic of celiac, but that's just me.

Why do you think that or why do charts seem to vary? From what I read 19 and up is Celiacs - why would 10 be unless I am just not interpreting my results correctly. I am so sorry for all you family has to go thru with this craziness and that it is so hard to pinpoint the issue.....I so appreciate the input!

 

[clanmcculloch]

Kristen and I definitely agree on the importance of understanding heredity. This is true of any kind of health concern. My concern over saying that if it's celiac then you have to understand the genetic component is the potential for dismissing the potential when celiac tests are negative. Both of my girls are now gluten free with all negative tests yet definite health improvement from going gluten free. We tried it because of our knowledge of my issues. If one person in the family has a health issue, allergy, anything "out of the ordinary" then if any other family member starts showing issues then these known issues should be at the top of the list of potential problems to consider, including gluten issues regardless of celiac tests.

As to why I think she'll likely need to be gluten free for the rest of her life, it's just based on everything I've seen since I began this journey into intollerances and other health issues. But, I did also say that it doesn't hurt to try a challenge once she's symptom free since she didn't have high antibodies. Once she's symptom free you'll be in a better position to identify symptoms that show up. If she does react to a piece of bread once she's symptom free then you can do another challenge once she's recovered from that (I'd give it time as in at least a month) and then try something with only a small amount of gluten to see if maybe she can tollerate trace amounts.

Unfortunately, far too many people end up finding out after far too much suffering that despite tests below the "standard" diagnostic level for celiac that they in fact do need to go gluten free and stay that way. There's still a lot that's not understood by the medical community when it comes to gluten.

 

[Denine]

Just my 2 cents. My DD, 10 was just diagnosed with celiac on Monday after an endoscopy. The visual and biopsy were both positive.

She never had any problems that we knew about until she started with horrible stomach pains while on antibiotics for bronchitis in November. We all thought they messed up her gut somehow and she was being treated as such. We ended up in the ER. She had a CT scan which showed nothing. We finally got to see the GI doc on the 8th. Bloodwork was positive for celiac. We debated as to whether or not to put her through the endoscopy since she had already been through so much. She has been in pain 24/7. It is a 9 out of 10 on the pain scale. We decided we needed peace of mind as to what was going on and that there wasn't something else besides the CD. I am glad we did. I didn't want her to suffer in the future if she was going to need the official diagnosis for some reason. After all, she is only 10 and they could come up with something some day to fix the problem.

We went gluten free on Monday after the endoscopy. It was very difficult to keep her eating gluten for that week prior. That said, she is still in as much pain as she was. We are hoping it starts to ease up soon now that she is eating GF.

 

[clanmcculloch]

Denine, if she's still suffering just as much since going gluten free, I'd highly recommend that you go dairy free as well, at least for now. When the body is suffering and struggling to cope with physical problems, one of the first things it does in order to manage the energy needs of that struggle is to shut off production of lactase which is the enzyme required to digest lactose (milk sugar). This is extremely common for people with celiac when first diagnosed. As the intestinal damage heals once gluten free, for many the production of lactase resumes. But, in the mean time, consumption of lactose causes physical discomfort and inhibits/slows down healing. In addition, many with celiac also turn out to be intollerance to casein which is the protein found in milk. Basically, if you eliminate milk for now, once she's symptom free you can easily do a milk challenge (give her a glass of milk) to see if she can tollerate it at that point. Many people with celiac find that eliminating milk at first helps and that they can then resume consuming it later. Just something to consider.

One more thing to consider. I'm not sure if this applies to you or not, but many people when going through GI distress end up consuming a lot of soup as it's an easy to digest and soothing food for many people. Lots of soups contain gluten. I just want to make sure you're not falling into that trap.

ETA: It's only been a few days. For some, symptoms may take a bit longer to ease up. I know that doesn't make you feel any better but hopefully she'll start improving quickly.

 

[disfan07]

Just my 2 cents. My DD, 10 was just diagnosed with celiac on Monday after an endoscopy. The visual and biopsy were both positive.

She never had any problems that we knew about until she started with horrible stomach pains while on antibiotics for bronchitis in November. We all thought they messed up her gut somehow and she was being treated as such. We ended up in the ER. She had a CT scan which showed nothing. We finally got to see the GI doc on the 8th. Bloodwork was positive for celiac. We debated as to whether or not to put her through the endoscopy since she had already been through so much. She has been in pain 24/7. It is a 9 out of 10 on the pain scale. We decided we needed peace of mind as to what was going on and that there wasn't something else besides the CD. I am glad we did. I didn't want her to suffer in the future if she was going to need the official diagnosis for some reason. After all, she is only 10 and they could come up with something some day to fix the problem.

We went gluten free on Monday after the endoscopy. It was very difficult to keep her eating gluten for that week prior. That said, she is still in as much pain as she was. We are hoping it starts to ease up soon now that she is eating GF.

My GI said that it could take up to a few months for some people to feel better after going gluten free. I had to gluten free because of a wheat allergy back in June and even though all of tests came back negative, my GI and allergist thought it might help my GI symptoms anyway and that maybe the tests were wrong. He said we needed to wait 3-4 months to really confirm if it was helping or not. After 4 months of being gluten free and still not feeling better (and actually worse) he confirmed that my GI problems were not gluten related.

So unfortunately, it could take some time before she begins to feel completely better. Sme people feel better faster than others. But no two people are the same. But hopefully she is one of those who will feel better very soon!

 

[wheels on fire]

My dd is is gluten free .but at first we struggled a results were negative till i jumped up and down and pointed out she is IGa and Igg deficient so course blood work wont show .

but lots of Drs do not make the connection between the two

 

[Denine]

Denine, if she's still suffering just as much since going gluten free, I'd highly recommend that you go dairy free as well, at least for now. When the body is suffering and struggling to cope with physical problems, one of the first things it does in order to manage the energy needs of that struggle is to shut off production of lactase which is the enzyme required to digest lactose (milk sugar). This is extremely common for people with celiac when first diagnosed. As the intestinal damage heals once gluten free, for many the production of lactase resumes. But, in the mean time, consumption of lactose causes physical discomfort and inhibits/slows down healing. In addition, many with celiac also turn out to be intollerance to casein which is the protein found in milk. Basically, if you eliminate milk for now, once she's symptom free you can easily do a milk challenge (give her a glass of milk) to see if she can tollerate it at that point. Many people with celiac find that eliminating milk at first helps and that they can then resume consuming it later. Just something to consider.

One more thing to consider. I'm not sure if this applies to you or not, but many people when going through GI distress end up consuming a lot of soup as it's an easy to digest and soothing food for many people. Lots of soups contain gluten. I just want to make sure you're not falling into that trap.

ETA: It's only been a few days. For some, symptoms may take a bit longer to ease up. I know that doesn't make you feel any better but hopefully she'll start improving quickly.

Thanks. She is taking lactaid with all dairy. She loves milk, so I hate to take it away. If there is no improvement in a couple more days, I will remove it completely. The only soup I serve is homemade. Todays dinner is grilled chicken, rice and green beans.

I keep telling myself it has only been 3 days on the diet. But after 8 weeks of pain, I want her better yesterday! I am trying to be patient though.

We are still waiting for the egg, soy and milk allergy tests to come back. Hopefully those will be in soon.

 

[Denine]

My GI said that it could take up to a few months for some people to feel better after going gluten free. I had to gluten free because of a wheat allergy back in June and even though all of tests came back negative, my GI and allergist thought it might help my GI symptoms anyway and that maybe the tests were wrong. He said we needed to wait 3-4 months to really confirm if it was helping or not. After 4 months of being gluten free and still not feeling better (and actually worse) he confirmed that my GI problems were not gluten related.

So unfortunately, it could take some time before she begins to feel completely better. Sme people feel better faster than others. But no two people are the same. But hopefully she is one of those who will feel better very soon!

I would be happy at this point if her pain just eased up a bit. Her doctor felt that she should start feeling better soon. Whose definition? I know it has only been a few days and info I have seen says 1-2 weeks. I was hoping for best case scenario.

 

[clanmcculloch]

When you say homemade soup, are you using any canned/bought stock as the base or are you making your own stock from scratch? I know this is going to sound insane, but also take a look at all of your seasoning bottles to be sure there's no flour in them. Some companies use flour as a filler. It will be clearly labelled if there's something more than just the seasoning in the container (either it just says Oregano or it shows Oregeno plus other stuff; they have to list other stuff if it's in there though they could use obscure names for the other stuff).

 

[DisneyDreamGirl87]

Hi there!

I am a celiac so I had to remove gluten from my diet, however DH was having similar issues with gas, bloating, diarrhea, etc with just overall discomfort. He tested negative for celiac (bloodwork and biopsy) but opted to try gluten free. He feels so much better and has no desire for gluten. Out GI doctor says that gluten serves no purpose to our bodies when there are great nutritional grains like quinoa and brown rice to supplement. I was severely vitamin d and b12 deficient as well as anemic but I take natural supplement everyday and they are bringing my
levels back up to normal.

If your daughter is feeling better and she takes her vitamins, I would stick with a gluten free diet. DH will have oats every once in a while and he is ok with that so maybe that can be something you reintroduce after a month or so.

Good luck!

 

[Denine]

When you say homemade soup, are you using any canned/bought stock as the base or are you making your own stock from scratch? I know this is going to sound insane, but also take a look at all of your seasoning bottles to be sure there's no flour in them. Some companies use flour as a filler. It will be clearly labelled if there's something more than just the seasoning in the container (either it just says Oregano or it shows Oregeno plus other stuff; they have to list other stuff if it's in there though they could use obscure names for the other stuff).

I use a stock, but it is GF already. I check all labels prior to cooking. I am going to go through my pantry and fridge this weekend and get rid of all the stuff I can't use anymore: That is the stuff I make meals for everyone with and not just stuff I can make separately like Hoisin sauce. I also don't buy seasoning blends. I buy individual herbs and spices.

 

[elmo2200]

I help teenagers in my area and they are more successful with the changes when they empowered to learn how to take care of themselves. I would suggest DD read Elizabeth Hasselbeck's gluten free book. It is an easy, entertaining read. Try to take her to a local support group as well.

 

[PrincessFelisha]

Hi there!

I became gluten-intolerant a year and a half ago after a stressful time in my life.

My stomach hurt non-stop, I had lower colon spasms on my left side, and I was bloated.

For the past year and a half I have eaten NO GLUTEN and I feel GREAT!

I read somewhere that more people are becoming gluten intolerant (like lactose intolerant when your stomach hurts and cramps) because companies are putting more bad stuff in commercial food these days.

I went to Disneyland last year and was DELIGHTED that Casey's had gluten-free hot dog buns!

I eat a lot of greek yogurt, chex cereal, brown rice, chicken, black beans, and a ton of fruits and veggies that I make smoothies with everyday in my vitamix - and I also make hummus and soups in it as well - and ice cream!

It's easy to manage once you get used to it. I'm going to WDW in September and I can't wait to try the GF options!

Best of luck to you!
Felisha