New This & A Little Frustrated

[jessabecc]

Hi All,

I'm new here, actually posting for my husband. I know he wont ever get on here to read, much less post so I'm on here looking for advice & support. I have a background in nutrition and *some* medical knowledge (nursing school and own research) and I'm very proactive in my own health and trying to help the hubby be as well.

My husband is 25 and has had symptoms since high school, but just now realized it!! He has not been formally diagnosed by a dr (I know..Im really pushing for him to go and have the blood test & biopsy), but we have arrive at a gluten intolerence/allergy by process of elimination and the results we've seen from it. For the past 6 years he's had this "weight" on his sides, almost love heandles, and stomach, been unable to lose weight he's gained, had bouts of diarrhea, very moody and absolutely no eneergy. We've tried low carbs diets and adding more whole grains. He would flucuate from day to day and never could figure out what was causing all the bloating. Finally the light bulb came on right before Christmas that he had gotten a lot worse when I changed over all whole grain/whole wheat. We decided to go gluten free to see if that was it. Within a week he had lost all of the bloat, no longer had diarrhea, was in a fabulous mood and had regained almost all of his energy!! I cook just about everything from scratch which has helped this not be such a big transition.

We've hit a few road bumps since then and he's not as "skinny" as he was and he's very frustrated. I wasn't careful in cleaning the cutting board, etc. because I didn't think he was "that sensitive" but after eating an omlette where I'd cut veggies on the cutting board and bloating back up, I've now completely cleaned the kitchen. He ate some lunch meat that apparently had gluten in it, although the package listed nothing that I could see (except "turkey broth") and he hasn't quite recovered from that 8 days ago. But he hasn't had anything with gluten since then.

Ive been doing a lot of lurking and reading on here and I've got him taking L-Glutamine, 3000mg of VitC, fiber and drinking a lot of water! He's finally seeing a little bit of a difference - it's almost like that last inch of inflammation is hanging on. I know it's going to take a very long time for the inflmmation to go down and for his gut to heal. I've just ordered digestive enzymes and aloe juice capsules at the recommendation of my naturopath.

Beer was a big thing for him, but we found Redbridge & Greens. He's since ditched the beer for red wine and has actually seen an improvement after I read a discussion on here about the possible benefits of wine in helping to break down what is in the gut so it can be moved out. Whole Foods is amazing with all their gluten free items and our grocery store has a whole aisle of stuff. It's so encouraging and helpful to see that stuff!

Is there any adivce for speeding the healing and getting rid of the inflammation? Does it get easier? He's been so frustrated, especially after the initial improvement and then the slight rebound. I'd just like to see him feeling 100% again. We're also missing eating out like we used to do.

Thanks!

[mushroom]

Hello and welcome to the board.

You and your hub seem to be taking a lot of the right steps in the direction of healing. I would make a couple of suggestions:

Since celiac/gluten intolerance is a malabsorption syndrome, we often end up short of some essentiall nutrients. It is a good idea to get the essentials tested,, Vits. B, especially folate and B12, and D especially, and minerals calcium, magnesium, zinc, potassium, iron/ferritin, to find out what you need to supplement for optimal health. If he is low on B12 he should have a DEXA scan because osteopenia/osteoporosis is often a co-rider with gluten intolerance.

A good, high-dose probiotic (to go along with the digestive enzymes and L-glutamine, helps restore the normal flora in the gut which have often been pushed aside by the bad guys, and will aid in healing.

Eating out is different for everyone and their degree of comfort with it. Some of the chains like PF Changs have gluten-free menus and if you find a knowledgeable staff you can eat there quite successfully. Read on here about restaurants and if you have one in your area of any of the chains favorably commented on, call the manager and have a chat to him about what precautions they take for their gluten free diners. When you go the first time (and this always holds true), go at an off-peak time when you can be sure they have the time to listen to you and take extra care with your order. Ask for the gluten-free menu and ask any questions of your server (especially if your hub has any other intolerances). If you don't like the answers, talk to the manager and if you are still not comfortable do not be afraid to leave. For a fine dining experience, call the manager again, and if it seems okay, ask to speak to him when you get there and see if you can be assigned a server who is familiar with gluten free. You don't want someone who is on his first night. If your server does not appear to be familiar with the menu, it is a warning sign that he probably won't have the answer to your questions and sometimes you can speak to the chef directly (especially if, again, it is not at their busy time). Or you can use your server as a go-between to the chef if s/he seems knowledgeable. I have often sent the server to ask the chef questions they don't know the answers to. Generally the more expensive the restaurant is, the more knowledgeable the chef is going to be, because he will have attended culinary school and they do teach allergen cooking. All you can do is be as carefujl as you can, and if you get considerate service tip well to encourage them.

Best wishes on your gluten free journey through life.

[ciamarie]

I believe it was Dr. Tom O'Bryan where I also heard the suggestion to take a fish oil / cod liver oil supplement to assist with reducing inflammation. It'll have natural vitamin A & D, as well. I use a mint-flavored cod liver oil from twinlab. Dr. O'Bryan's site is www.thedr.com -- I listened to all of the mp3's on there, so I don't specifically know which one or more of them mentioned the fish oil.

[jessabecc]

Wow Sorry for going MIA! I appreciate the advice! Poor hubby has had a reaction just about every weekened this month. We've stopped introducing new products for now unless we can confirm via multiple sources (google, this forum, etc) that it is gluten free!

Ive got him fiber, Omega fatty acids,MSM, fiber, Vit. C and a mutli-vit. I'm quite sure he is vitamin deficient - is that tested in a normal, routine blood panel?

Im hoping he'll decide to be tested...his mom, a former nurse, sees no point as "the course of action is no different" whether youve been tested or not. Course she didn't even know what Celiac was! He's getting more and more frustrated each time he's "glutenized" as I call it.

Has anyone had success with Kombucha to ease reactions? Ive been drinking for my digestive health, gave it to him today after a reaction and it seemed to help stop it!

[Darn210]

I'm sorry to tell you this but he needs to be ON gluten in order for any of the Celiac testing to be conclusive. From what I can tell, he's been gluten free at least a few weeks and possibly since around Christmas time. Testing for vitamin deficiencies would not be affected.

I know that I depend on the internet for product information but take a look at the dates (if you can) of when info was posted. It can become outdated quickly. When all else fails, call the manufacturer and supply them with the UPC code from the product. They can also give info on shared facilities or shared lines which does not have to be listed on the product label.

Have you lurked enough to see that he needs a new and separate toaster? That it's doubtful that you can adequately clean a formerly used cutting board or pasta strainer and those should also be replaced? If the house is not gluten free, he needs his own condiments so that he doesn't have gluten bread crumbs in his butter, peanut butter, etc.

Also, he can be having reactions or he can just be in the process of healing. In the beginning, the digestive system can act up for no reason at all. We had that with my daughter, and after a few months, the episodes started getting farther and farther apart until they finally went away. You still need to be diligent about verify a product's gluten free status and probably hold off on introducing new products just so you can be sure it wasn't something from a new item. Simple whole foods would be best.

[Darn210]

Also, I just have to ask . . .

You said "every weekend" . . . Is he a lot more physically active on the weekend? I just wanted to tell you that when my daughter was "reacting" after she had gone gluten free, it was almost always after(although not limited to) being physically active. Soccer season was a nightmare. Her GI said that it was not uncommon. This could have just been a quirk for my daughter and maybe nobody else had this problem. It helped to really hold off any food or have minimal food for a couple of hours before a game . . . which is kind of hard on a (at the time) six year old. She had been diagnosed with a slow digestive system at the same time as the Celiac. Food would stay in her stomach a lot longer than most kids. This did eventually go away after being on the diet for a while.

[AVR1962]

I believe it was Dr. Tom O'Bryan where I also heard the suggestion to take a fish oil / cod liver oil supplement to assist with reducing inflammation. It'll have natural vitamin A & D, as well. I use a mint-flavored cod liver oil from twinlab. Dr. O'Bryan's site is www.thedr.com -- I listened to all of the mp3's on there, so I don't specifically know which one or more of them mentioned the fish oil.

If you have not asked to have vit levels checked I would highly recommend you do so. A & D are vits that taken in too high amounts can cause toxicity in the body and that will only compound the issues you are currently dealing with. Knowing what your husband needs is really important.

[GFinDC]

It doesn't do any good to be tested after being gluten free. The tests for the antibodies are not going to be reliable unless antibodies are being produced. Enterlabs is another possible option. They say their tests are accurate even after going gluten-free for up a a year. Enterolabs does stool testing, not blood antibodies.

Your husband should really spend some time learning about celiac disease. It doesn't go away so he is going to be living with it for the rest of his life. That can be a lot easier to do if he is informed.

[faithforlife]

My son reacts to sugary things like Sprite or a Popsicle as if it were gluten. Maybe there's another trigger as well making him feel badly.

[jessabecc]

Thanks for the responses! What I meant by "every weekened" was that it seems every weekend (or more often than he'd like) we run into gluten without meaning too. Like this last weekend we were playing poker with a friend. Hubby decided to have Captain Morgan & coke (hes had it before and been ok), used his friend's shot glass to measure it out. Little later had a small reaction, I remember now our friends had several whiskey bottles on their counter and I bet the shot glass had had whiskey in it at some point and thus had gluten stuck in it. Or we pick up the bag *beside* the bad of gluten free chips because the labels are both blue. Live and learn, but it's frustrating to him!

Yesterday we went to local organic restuarant with gluten free bread. The kitchen goes to amazing lengths to ensure against cross-contamination. I was super impressed, but he still had a reaction later - pretty bad one too. After talking with the owner, I found out they use Food for Life bread which doesn't seem to be too reliable of a brand after I researched on here. I'm certain it was that and I'm going to let the owner know so theyre aware. We've also discovered hes less sensitive to barley, but still produces a reaction.

I'll have him get tested for Vit. defeciences. And I have lurked enough to know it's too late to test for gluten allergy which isn't a huge deal. He is becoming more interested and researching stuff now - I think he was kinda in denial at first. We just found an awesome gluten free bakery owned by a gastroenteroligst which cheered him up! I havent replaced a lot of our cookware - just cutting board, strainer and pasta pot. We havent had a toaster but I ditched our baking sheets. I cleaned all of our other pots and pans that probably havent had any type of gluten in them with a bleach solution. We just got married last year so everything is brand new and just can't through it out!

What do ya'll do when traveling? We have a good 2 day road trip end of Feb. He'll pack snacks and sandwhich stuff, but what about fast food? It seems kinda dangerous, but he'll have to eat somewhere at least a few times!

[jessabecc]

Oh I forgot to add - Ive had him switch from diet soft drinks to regular ones and I just recently read something on here about MSG and reactions (which I try to avoid anyway when buying prepacked snacks). Sugar doesnt seem to bother him and he just decided to ditch milk for the time being. Working out seems to help actually, if he can muster the energy. I do wonder if it's like ya'll said above and someti mes his system is just acting up or if ate something that sparked his digestion.