Questions

[wahmmy]

Hi there! I'm new here and have some questions I'm hoping someone can help me with. First I'll give you some history:

My husband (37) has had elevated liver enzymes in his blood work for several years now. Not alarmingly high, but high enough to be out of the normal range. Otherwise, he's very healthy. They've run many tests, CT scans, ultrasounds etc. without finding anything. Several months ago the doctor wanted him to get a needle liver biopsy, which we were both against since it seemed they were just grasping for straws as to why the numbers were elevated. Since he's healthy and they weren't that high, we were aganst it. I once again began to research what else could cause these elevations and celiac came up. I told him he needed to get tested for this, but he didn't at the time.

A few months ago, after more than a year of health problems, his father was diagnosed with celiac disease through blood tests and biopsy. After just this short time on the diet, he has improved drastically. My husband got blood work for it last week and got the results yesterday -- extremely high for celiac. The doctor (a different one than the one wanting the liver biopsy, a general practitioner) is scheduling him for the intestinal biopsy with a specialist to confirm celiac. His dr. has diagnosed him with it now, b/c his numbers were so high for it, but says he needs the biopsy as well. He feels the biopsy will confirm it and is extremely doubtful the biopsy will be negative. He told him to start the gluten-free diet yesterday, but after speaking to my in-laws and reading about this on your forum, we realize that he needs to stay on gluten until the biopsy, and is going to let his general dr. know today.

I've done a lot of research about this over the last few months, and even more yesterday since my husband's results came in, but I still have questions!

1. We have two daughters, ages 5 and 2. How likely is it that they may have this or end up with it? Should we test now? There are no symptoms. And it takes three adults to hold my petite oldest down for blood work -- and one more to do the draw (we know from several months ago needing to get some allergy tests done -- all of which were negative).

2. Is it likley that the intestinal biopsy will be negative if the blood work was so high?

3. My husband has had no symptoms that we knew of, and his digestive system has seemed healthy. From what I've read, going gluten-free and then accidentally getting gluten in your system again (or purposefully if you cheated on occasion) can cause misery. If my husband goes gluten-free and then accidentally gets it in his system, will he have the terrible misery that I've read about if he's never had issues with it yet? In other words, will his body react strongly against the gluten then even if it never had before? We understand how serious this is and are ready to make the change, but I'm just wondering.

I know there were others but I can't think of them right now. Thank you for your time!!

[ShayFL]

1. If he has a Celiac gene (and he could have both) then your girls have a 50/50 of getting this gene from him. If you have a celiac gene then the chances are nearly certain. Have you been tested?

Tests are notoriously inaccurate in children under 6. But I would recommend getting them anyway.

If you can afford it, you can use Enterolab to see if they have the genes (cheek swab) and test for gluten intolerance and malabsorption (stool). No needles. It does not dx Celiac, but can give you everything you need to know (if they need to be on a gluten free diet).

No symptoms. Are you sure? Are they both normal height for their age (not in the lower percentiles)? You mentioned your oldest was "petite" and she must have had some symptoms for you to get allergy tests done.......

Large tummies? Any skin issues at all? Gassy? Cranky? Headaches? Delayed development in any area? Are their teeth discolored? Thin enamel? And there are MANY other symptoms related to Celiac that are not "digestive".

With the family history and your DH Dx you could push for genetic testing for your girls. See if they have the genes for it. Then if there really are NO negative health symptoms in any area, you could take a wait and see approach.

But dont ever fool yourself just to make pretty for social/convenience reasons. Celiac is an auto-immune disease and left untreated can cause A LOT of damage. There is a type of lymphoma that is hard to treat related to untreated Celiac. Hashimotos/Graves thyroid diseases, Type 1 diabetes, MS, Infertility and others have been confirmed to be tied into untreated Celiac.

Regardless of "worse" symptoms when accidental gluten gets in, you DO NOT want to ignore Celiac. Much suffering later on would await.......

2. Yes, biopsy can be negative if the technician does not take A LOT of samples from MANY DIFFERENT areas. Damage can be spotty. Interpretation also depends on the skill of the lab technician looking at the slides.

Either way with a high blood and Father Dx, a gluten-free diet is a MUST. For all of the reasons above (even if he doenst have any digestive symptoms). Silent damage is occurring and can lead to cancers and such. You dont want that.

3. Some Celiacs react VERY STRONGLY to gluten once off for a enough time. Some do not react at all. It is actually BETTER to get a strong reaction because a. you will always know when you have gotten it and can avoid that situation/restaurant/product again and b. It is a greater deterrent to "cheating".

If he doesnt react at all, then silent damage could be going on and wouldnt be evident until something horrible is dx.

***It is actually A LOT easier for the entire household to be gluten-free. My home is 100% gluten-free. My DH and DD both eat gluten, but not in the house. I prepare delicious gluten-free meals and yummies for all of us. My DD actually prefers us gluten-free. She says I am a better cook and bake more.

Hang in there!!

[CarlaB]

I'm glad that you are educating yourself, and learned that he needs to stay on gluten until the biopsy.

As far as the children .... 30% of the population has the celiac genes and 1% have celiac disease .... so, they do have a higher % chance than the general population of developing celiac, but it's still only about a 3% chance.

As the previous poster suggested, really look at their symptoms. Keep a watch for the symptoms in the future.

I'm glad your hubby discovered the root of his health problems before he got really sick from them. Eventually it would catch up with him. It's worth if for him to go gluten-free. He might have an exaggerated reaction in the beginning, but after some time and after his intestines heal, the exaggerated reaction might lessen as it has for many here.

[happygirl]

Welcome to the board!

1. We have two daughters, ages 5 and 2. How likely is it that they may have this or end up with it? Should we test now? There are no symptoms. And it takes three adults to hold my petite oldest down for blood work -- and one more to do the draw (we know from several months ago needing to get some allergy tests done -- all of which were negative).

If a first degree relative has Celiac, the risk is 1 in 22. Keep in mind in some families, there are a lot of people with Celiac. In others, there is only one. They may have it now even with no symptoms. Silent Celiac is much more common than 'classic' Celiac, researchers are learning. They may not have it now, but could develop it at any time. Or, they may never have Celiac.

https://www.celiac.com/articles/647/1/Preva...-133/Page1.html

Open Original Shared Link

2. Is it likley that the intestinal biopsy will be negative if the blood work was so high?

It depends on which blood test was so positive. If it was one of the specific markers (EMA or tTG), then it is less likely that it is negative if the biopsy is done correctly, with 4-6 biopsy specimens taken (Open Original Shared Link) There is some research that correlates EMA/tTG tests with the intestinal damage, meaning that mild damage may not show up on bloodwork, but more celiac damage shows up on the bloodwork.

3. My husband has had no symptoms that we knew of, and his digestive system has seemed healthy. From what I've read, going gluten-free and then accidentally getting gluten in your system again (or purposefully if you cheated on occasion) can cause misery. If my husband goes gluten-free and then accidentally gets it in his system, will he have the terrible misery that I've read about if he's never had issues with it yet? In other words, will his body react strongly against the gluten then even if it never had before? We understand how serious this is and are ready to make the change, but I'm just wondering.

There is no one size fits all answer to this. Some are 'silent' before and after diagnosis. Some are symptomatic before diagnosis, go gluten free, and then react as you described above. Others are symptomatic before, and are not as symptom-sensitive after diagnosis. For those who are 'silent', its especially important to receive follow up care (bloodwork monitoring) to make sure his Celiac antibodies drop to a normal range.

[Jestgar]

***It is actually A LOT easier for the entire household to be gluten-free. My home is 100% gluten-free. My DH and DD both eat gluten, but not in the house. I prepare delicious gluten-free meals and yummies for all of us. My DD actually prefers us gluten-free. She says I am a better cook and bake more.

Hang in there!!

You could skip the testing and just all go gluten-free. It's a very healthy way of eating (unless you choose to spend the money on the pricey gluten-free goodies).

[Fiddle-Faddle]

You could skip the testing and just all go gluten-free. It's a very healthy way of eating (unless you choose to spend the money on the pricey gluten-free goodies).

I second this!

At this point, you already know from the extremely high blood test results that he HAS celiac. The biopsy will not re-diagnose him--you already have the diagnosis. The biopsy will likely confirm the diagnosis by showing villi damage.

It will also put a lot of $$ in the GI's pocket, and IS a somewhat risky procedure for your husband, especially now that MRSA rates are higher than they used to be.

Unless there is something specific OTHER than celiac that they are looking for, you already have your diagnosis. Besides, if for some reason, they biopsy an UNdamaged portion, and come back and say it's NOT celiac (which wouldn't be true, as the bloodwork is positive), THEN what would you do?

And, yes, he does need to continue eating gluten until the biopsy, or it's pointless. And the longer he continues to eat gluten, the more autoimmune damage there will be.

I tend to get kind of upset that doctors ask patients to continue to damage themselves when the answer is staring them in face and PROVED by bloodwork.

If he were reacting to peanuts, would they tell him to keep eating peanuts until he does enough damage to be measured on an invasive test, even the bloodwork already shows a reaction????

[Fiddle-Faddle]

3. My husband has had no symptoms that we knew of, and his digestive system has seemed healthy.

I thought I had no intestinal symptoms--until I went gluten-free. Only then did I realize that I had had LOTS of intestinal symptoms that I had been ignoring!

[wahmmy]

1. If he has a Celiac gene (and he could have both) then your girls have a 50/50 of getting this gene from him. If you have a celiac gene then the chances are nearly certain. Have you been tested?

No, I haven't been tested. To my knowledge, no one on either side of my family has any issues with Celiac, although I realize that doesn't mean it's not there and misdiagnosed or something. Also, I've been tested for a huge amount of auto-immune disorders and other things by a reproductive endocrinologist and this never came up. I don't have infertility, but I have a lot of complications during pregnancy (explained more below).

No symptoms. Are you sure? Are they both normal height for their age (not in the lower percentiles)? You mentioned your oldest was "petite" and she must have had some symptoms for you to get allergy tests done.......

Large tummies? Any skin issues at all? Gassy? Cranky? Headaches? Delayed development in any area? Are their teeth discolored? Thin enamel? And there are MANY other symptoms related to Celiac that are not "digestive".

My oldest is petite b/c she was premature, but she is catching up to her classmates. I have problems with low progesterone during pregnancy (I co-own and am the webmaster for http://lowprogesteroneinpregnancy.com) and have to be on supplements during pregnancy. With my oldest, I was only on them for the first four months and she was a premie. With my second, I was on them the beginning and then started the progesterone shots to help prevent pre-term labor and she was born full-term. I also have a blood disorder called MTHFR that contributes to pre-term labor and miscarriage.

The allergy tests showed her not being allergic to anything. For two years she was on allergy medicine she didn't need b/c she had "allergies." When we finally took her to an allergist and had the tests run on her skin and blood, it was all okay. The problem was diagnosed to be a sensitive immune system and she's allergic to certain viruses (weird, I know, but it's true!) and she was getting a lot of colds that were being misdiagnosed as "allergies." The only other thing she's allergic to are certain insect bites. When we started her on different multivitamins and immune-boosting supplements, she started getting sick less than her classmates.

No delayed development in any other area that I can think of. Cranky, gassy, headaches, no. My youngest is a fair-skinned red head and has some eczema at times that we keep under control with a special baby oil and expensive body and hair care, and wipes, lol! Her skin is extremely sensitive to certain chemicals and this would be the only concern I think with her.

Thank you all so much for your help!!

[nora-n]

It said there was a1 in 22 chance of being celiac with one celiac diagnosed in the family, but on the irish forum and the norwegian forum, when they had a small poll, about 40% ended up diagnosed after they tested the whole family, and in some families it was more like 60-70%.

Someone sais to test about every two or three years.

Silent celiac os very common, even with complete villous atrophy.

Some posted that they tested a sibling of their symptomatic child, and the one without the symptoms had even more villli damage...

nora

[CMCM]

Celiac is an elusive thing to diagnose in most cases. My mom got very sick at about 46 back in the 1960's...she eventually got so sick she was down to 85lbs and nearly died from malnutrition. Doctors were really clueless back then, and it was just luck that she finally encountered a doctor who knew about it. They did the biopsy and said her intestinal villi were gone....the walls of her intestine were smooth as a billiard ball. They didn't know if she'd even recover. But 6 months gluten free, she had recovered remarkably, was back up to her normal 120 lbs. and a follow-up biopsy showed her villi had regenerated. Today at age 87 she is quite healthy and active, with no major health issues. However, she is a very reactive celiac because even a microscopic smidgen of gluten makes her violently ill for a couple of days.

When I got tested at age 58 and discovered I had a celiac gene, my mom got curious and wanted to know about her genes. Testing revealed she had TWO celiac genes, which meant she got one from her mom and one from her dad. SO....her mom had the gene but did she have celiac disease? Not obviously, or in the way my mom does. And my grandmother died at 99 so it didn't shorten her life! But, she did have issues. She had terrible arthritis for a lot of her later years, she broke her hip in a minor fall at age 90 (due to osteoporosis?), she had sinus issues and various other things. I think that had she known and had she eliminated gluten for most of her adult life, her last 20 years would have been much much better health-wise.

My gluten problems probably really accelerated in my 30's, although I never suspected anything related to celiac disease until I was 58. As a baby I had a sensitive digestion. I was colicky. I had fainting spells in my teens and 20's. I was always slim no matter what I ate, but never skinny and I never lost weight unexpectedly. I always had what I considered a "sensitive" digestive system and always had to be careful what I ate, but there was no readily identifiable pattern of what I ate vs. how I felt. In my 30's I was hit by migraines, which persisted pretty much until I eliminated gluten. I had trouble with dairy, but what I eventually realized was that when eating gluten, dairy gave me problems. Less so when gluten was out of my diet. Also in my 30's I developed an allergic type cough and asthma type symptoms. But no doctor could ever diagnose me with asthma, despite the identical symptoms. When I finally eliminated gluten, the migraines magically disappeared, the asthma symptoms disappeared, the cough is mostly gone. The joint pains are also mostly gone, but re-appear if I slack off on the gluten-free diet. I do see the connection now.

I guess my point is that with many of us, symptoms vary with time and age. Even now, I mostly avoid gluten but occasionally slip up. Sometimes when I slip up I get sick. Sometimes I get no reaction. It's very frustrating, but you need to be informed and aware, I guess, and then do what seems best for you. I wish I'd had a clue about all this from my 20's onward....I think it would have made a difference in how I ate most of my life.

The question for people in my situation is this: I don't have a firm diagnosis of celiac disease since I never had the biopsy. I do have the gene, and however valid the Enterolab stool test is, it indicated autoimmune activity that could be related to gluten. When I eat zero gluten I feel really good. If I get sloppy and allow some gluten into my diet, the question is always "What kind of damage is being done, if any, with these occasional exposures to gluten?" No one can tell me this with any degree of certainty. This is the problem.