Newly Diagnosed And Struggling (Ended Up Being Pretty Long Sorry)

[mamabear272]

I have had stomach problems as long as I can remember. My family doc diagnosed me with IBS (which I'm finding out is pretty common for "us" to be dx with IBS). I continued to have problems with my stomach and he referred me to a GI doc. She did blood work and scheduled me for an endoscopy and colonoscopy for later this month. Last Thursday I was in the ER doubled over in pain and vomiting. It was suspected that I had diverticulitis. I was admitted and on Saturday had an endoscopy. Sunday they tried to start me on the prep for a colonoscopy, which I didn't tolerate. Monday night they started pill version of colon prep which went much better. Tuesday I had the colonoscopy. Well they attempted it but because of the inflammation from diverticulitis, they couldn't finish. Back to Monday...I get a call on my cell phone from the GI doc's office (she had just left me 20 min prior but didn't put me together with the person they were calling). They told me I tested positive for Celiac Spruce. Huh?? No I didn't. I don't have that. Actually looking back, I've had this for a long time! OK well at least I know what's wrong and we can fix it right? Right!

Now I'm 5 days into this new way of life. At first, I was like ok I got this. There's still a lot that I can eat. Today was a little rough. Because of the diverticulitis, I'm on a low residue diet. Plus, I'm trying to deal with my new celiac diet. I went to the store and got some gluten free stuff and was checking labels. That didn't set me off. I went to dinner at my mom's where she had lasagna. I brought my own spaghetti noodles to have with spaghetti sauce which I was fine with. Until I got there and she also had garlic bread and bread sticks (which I love). There was also cottage cheese, strawberry shortcake and turtle pie. (The cottage cheese I'm questioning because I keep reading that I can have it but it has maltodextrin in it which I've read that I can't have.) I couldn't have salad because I can't have raw veggies with the low residue diet. If I could have had salad, I couldn't have had ranch dressing because it had dextrin in it. I had a small meltdown not too long ago because I'm just discovering more and more that I can't have.

And I don't feel much better now than I did when I went into the hospital. I spent Friday to Tuesday on clear liquids (probably shouldn't have had the chicken broth due to gluten). Then I've been on low residue, gluten free diet since Tuesday evening. My stools are still the same as before (frequent and loose) and my stomach still hurts. I just want to know how long it's going to be before I feel better. I have a lot against me right now I know that. I'm just so sick of being sick! I'm sick of missing out on life because I don't feel up to it. I just want to know when it gets better??? I'm struggling so hard right now and could use some encouragement.

[psawyer]

(The cottage cheese I'm questioning because I keep reading that I can have it but it has maltodextrin in it which I've read that I can't have.

Without question, maltodextrin is gluten-free. There may be another issue, but I'm not aware of one.

Dextrin could be wheat-derived, but under US federal law that must be clearly disclosed on the label using the word "wheat."

It sounds like you have issues beyond gluten, and that would be outside my expertise.

[domesticactivist]

Hey there. I'm sorry you're having a rough time - but it's good you're finally getting some answers. Each person's body is different, and you might be in for a long road of healing. If you wrap your mind around it just the right way it won't be so bad.

It *is* hard to be on a restricted diet. It's especially hard at first - when you aren't feeling better, and you're making missteps, and you have to suddenly deal with being confronted with everything you are missing.

That part does get better as you get into a routine, figure out what you can eat, and get used to seeing others with things that aren't options for you.

I think one thing that really helped me and my family was just drawing a line in the sand. We stopped even considering things like eating out, eating other people's cooking, eating packaged food. The diet we started (GAPS) starts out very low residue. You might look into it - it's improved all of our health so far. I have posts about it on my blog.

Focusing on what we can eat instead of everything that's off limits makes a really big difference. I really do believe that starting off slow, with a small list of things to eat, and focusing on those is easier than making a list of everything not to have, both from an emotional and from a practical standpoint.

As for maltodextrin - it's out for us, too. First off, my son is allergic to corn (I think I am, too). Maltodextrin is derived from corn, potato, or rice - all things we don't eat. Also, maltodextrin is a polysaccharide sugar - the hardest kind to digest. We stick to simple sugars in extreme moderation. I think my partner is working on a post about the reasons why.

[Takala]

This is going to take a while, so don't despair.

Celiac may have left you in a temporary state of lactose intolerance, so you may not do too well in the beginning with dairy products until you have healed up somewhat. You may want to stick with aged cheeses or safe, gluten free yogurt which are supposed to be very low lactose. Or you may want to use a substitute, such as coconut milk.

You can make quick breads in single serving sizes in the microwave, in a ramekin cup, very quickly. You can also put the gluten-free flour mixtures into a ziplock baggie and mark it with what sort of liquids to add to it, to take somewhere. You can buy gluten-free bread mixes and make almost anything gluten free. You can also end up getting a bread machine. I have not done this yet only because if I have a 2 lb loaf of bread sitting there I may be temped to eat it all, and I enjoy experimenting, and I like corn tortillas.

If you are sensitive to certain ingredients you can learn to substitute. Some people cannot handle grains at all ( I went grainless in the beginning, and am lower grain than a normal person) and learn to make breads out of almost anything.

You can try putting whatever vegetables you can eat thru the blender with water and making a puree or soup of it. I've done this a lot in the past, with leftover salads, safe broth, and corn tortillas torn up in pieces and soaked in it, but I just give this as an example.

If you can, try canned pumpkin, it's filling, it's already mashed, and it can be used as a fruit or vegetable depending on what you season it with.

Your relatives are going to drive you crazy because it is likely they are not going to "get it" in terms of what gluten cross contamination really means. You can attempt to educate them, but rest assured, letting others handle or make your food, in a normal kitchen, unless they have been taught and are careful, and have some of the equipment in the kitchen dedicated to gluten free, is a cause of stress because they will either mess it up, or not realize that you don't want to eat the glutenized product. Almost of all of us cook, and most of us just don't go anywhere without bringing some food along with us. Many of us also will eat the safe stuff we really like at home, and regard social occasions as when we have something to drink, maybe a snack, and talk or visit or something. This way we are not starving hungry famished when we go somewhere, and can just look like we have willpower. You may luck out and find a family member that "gets" it, make or have a friend that "gets" it, or end up dating or marrying one. (the cutest blogs I've read are both by people who were either celiac and married a chef, or were a chef and had a boyfriend who was celiac - and they were dedicated to making safe and delicious food for each other.)

Even my husband, who cooks and is very careful, sometimes has not read the labels perfectly, and picks up something at the store.... I catch 99% of it. And then there are the items which are really supposed to be gluten free, but are not. Or the ingredients changed, and it now has something else you just cannot handle.

So some flexibility is in order after you get done having the meltdowns, and everybody here knows exactly what that is like. Including being really tired, and standing in the store aisle reading the now different label in disbelief that your favorite manufacturer dared to really screw up your favorite item, and then running thru every profanity in the book under your breath #$%%^&*(#@%^&*(*++)(^## !!!!!!!

[mamabear272]

The reason I questioned the maltodextrin is because of the word "malt" in it. I know that I can't have that.

My husband has been great through this. He dealt with my meltdown and talked me down. I have teenage kids and I think it's going to be a while before they "get it." They don't understand and are so involved in their teenageness that they aren't paying attention to me.

Right now I'm just wondering when I'll feel better. I'm most frustrated with that. I'm sure I'll muddle through the rest and find things that I can eat and feel ok after. I'm not gonna lie, I will miss beer.

[psawyer]

Malt is a source of gluten. The letters m-a-l-t are not.

Gluten:

Malt flavor

Malt extract

Malt vinegar

Safe ingredients containing the letters m-a-l-t:

Maltodextrin

Maltose (a sugar)

Maltase (the digestive enzyme need to break down maltose)

Maltotriose (another sugar)

[Debbie B in MD]

I wish I could give you a great big hug. It is a difficult transition, but once you are recovered from the liquid diet and start eating gluten free, you will begin to feel better. Red Bridge beer is gluten-free. I went to the liquor store and asked for help. The other posters are full of wisdom and ideas. I just wanted to chime in to tell you that you are not alone and this is a great place to post victories and celebrations as well as rant and have a pity party. You are among supportive friends. Tinkyada is really good pasta. We like it best the first day, not in left overs. Just thinking about the lasagne. I hope you are feeling better soon.

[mamabear272]

Malt is a source of gluten. The letters m-a-l-t are not.

Gluten:

Malt flavor

Malt extract

Malt vinegar

Safe ingredients containing the letters m-a-l-t:

Maltodextrin

Maltose (a sugar)

Maltase (the digestive enzyme need to break down maltose)

Maltotriose (another sugar)

Omgosh! Thank you! Here, I was thinking I had a ton more that I couldn't have just because of those four little letters. I was writing off a lot of stuff because of them. Oy. There is so much to learn!