Question for Those who are Gluten Intolerant/Celiac

[BearcatsFan]

I have some questions for those of you who have been diagnosed gluten intolerant or as having celiac disease. It's a long story, so I hope you are inclined to read.

My DH was diagnosed with IBS about 10 years ago. He was complaining about some stomach problems he was having, so our regular doctor sent him to a gastroenterologist to see what was going on. Gastro tapped on his tummy, listened to tummy with stethoscope, diagnosed him with IBS and said he needed a colonoscopy. In and out in 5 minutes. I barely got a question in as he was walking out the door whether or not we needed to keep a food journal or keep track of what he ate; gastro replies, "Those are not helpful, don't bother," and kept on walking.

DH gets the colonoscopy within a month, and everything is pronounced fine - gastro is satisfied with the IBS diagnosis. We go on with our lives, pretty much the same as always.

All these years later, DH is still having stomach trouble. Now add to that some serious weight loss. I'm talking 20 pounds in a quick fashion, and the man eats like there's no tomorrow. He's been (reluctantly) back to our regular doctor 4 times now. Doc says there's nothing wrong - has done blood work for thyroid twice, it's fine - says there's no other tests he can do. No referral to anyone else, no nothing. Says don't worry about it, perfectly normal at 6'4 to weigh what he weighs (meanwhile, his clothes are hanging off him).

I'm pushing, pushing, PUSHING DH to go to another doctor. Someone, anyone. I feel in my gut that *something* is wrong here. DH is reluctant, trusts regular doc. I am beginning not to.

Here are the symptoms DH is having:
Abdominal bloating/gas
Intestinal pain/cramping
Constipation/diarrhea
Weight loss (gone from 215-193 in about 8 months while eating like a horse)
Fatigue/no energy at all
Depression (regular doc wanted him on anti-depressant, DH refused)

Here are my questions:
1. With gluten intolerance/celiac, do you have symptoms all the time or are they occasional?
2. Do you have all symptoms all the time, or in different combinations?
3. What tests were you given in order to find your diagnosis?
4. How hard was it to get your doctor to listen that something was wrong? And if they were resistant, what finally pushed you to get a second opinion or insist on testing?

I have seen so many posts on the DIS regarding this medical issue - I've done a little research on my own, but I'm going out of my mind with worry here. Please help.

Thanks in advance for suggestions, comments, ideas, etc.

 

[Dancind]

The symptoms certainly point to celiac/gluten intolerance, but not the weight loss. Better get him back to the doctor.

Usually the weight loss happens after gluten/wheat is avoided.

 

[WheeledTraveler]

Weight issues with Celiac's can actually go either way. I have a friend whose mother ended up in the hospital because she'd lost so much weight (along with other symptoms) and eventually they managed to diagnose Celiac's as the cause of all the problems. She was getting so sick that she wasn't really absorbing anything and I don't think was digesting much at that point. My friend's mother is an extreme example, though, as most people don't end up in the hospital as part of their diagnostic process!

 

[buffettgirl]

Celiac usually can be tested via blood test and endoscopy. Because it's an autoimmune disease (most of the time) the antibodies show up on blood test, and then scoping with biopsy will usually reveal the full truth...but if you've already gone to gluten free eating, it won't show, so don't do that.

But that would be the definitive testing for him. Celiac usually goes along with a ton of other autoimmune illnesses, so many of my friends with kids with diabetes also have celiac as well. But, celiac is pretty uncommon in men, I can't think of anyone I know who actually has a son with celiac.

 

[SDSorority]

To me, this has gluten intolerance or celiac written all over it.

Don't let him go GF before he gets tested because then it won't show up in the blood tests. Or, if blood tests aren't that important to him.... have him go GF for a month or two (strict) and see if it makes him feel better. (I bet it will...) If it does, you found your problem. Since there's no "cure" for celiac or gluten intolerance other than avoiding gluten and gluten containing products, there's no harm in doing your own 'test' for a while (in my opinion). If you want to be SURE that he has the antibodies before going GF, have him go do the blood tests. You'll want the gliadin antibodies and the celiac gene tests. Our insurance covered our blood work, so I bet yours does too (call to check first). Have the doc order a script and bingo bango, you'll know if there's intolerance. Then, go off of gluten.... forever. So many more people are now GF that restaurants and food companies are starting to "get it" and make more products that cater to us GF'ers.

 

[BearcatsFan]

Thank you all for the replies. DH has agreed to go and see a different gastroenterologist. I made the appointment this morning. First thing the girl asked me when she heard his symptoms was whether or not he had ever had the celiac blood test and said they sounded typical of someone with a gluten intolerance or celiac.

He sees new gastro next Tuesday, so hopefully we'll get started down the road to some answers then.

 

[SDSorority]

Thank you all for the replies. DH has agreed to go and see a different gastroenterologist. I made the appointment this morning. First thing the girl asked me when she heard his symptoms was whether or not he had ever had the celiac blood test and said they sounded typical of someone with a gluten intolerance or celiac.

He sees new gastro next Tuesday, so hopefully we'll get started down the road to some answers then.

If he does have to go GF, it can be really intimidating at first. But once you get used to know what you can eat or how to ask how your food is prepared... it really isn't bad at all. Many of us are GF You can find local pizza places that carry GF pizza, they make pasta out of rice that tastes just like 'normal' pasta that you can get at some restaurants and at the grocery, Udi's bread is AWESOME and tastes just like normal bread.... it's just a matter of changing up your shopping routine. Now that said, it would be difficult living in a house where half of the house is gluten free and half isn't. Cross contamination can be a big issue for some people... so as a family you'll want to decide how to handle it. DH and I are both GF, as are my sister and her husband, but my parents and DH's parent's aren't. My parents "get it"... DH's parents... don't. I almost always get "glutened" when I eat at DH's parents' house because of cross contamination. Someone dipping their wheat cracker into a dip that I'm eating with my veggies.... annoying. But once you learn how to navigate the yummy world of being GF, it's a lot less daunting/intimidating.

 

[My2CrazyGirls]

I am wondering....if you go GF and then want a celiac test, how long do you have to eat gluten for the test to be accurate?

 

[My2CrazyGirls]

I am wondering....if you go GF and then want a celiac test, how long do you have to eat gluten for the test to be accurate?

Does anyone know?

 

[WheeledTraveler]

I am wondering....if you go GF and then want a celiac test, how long do you have to eat gluten for the test to be accurate?

I can't remember exactly off the top of my head, but I think I've heard anything from 1-4 weeks (with closer to 4 weeks being more common).

 

[My2CrazyGirls]

I can't remember exactly off the top of my head, but I think I've heard anything from 1-4 weeks (with closer to 4 weeks being more common).

Thank you