Whine Alert - What Is Going On?

[sahm-i-am]

I am going to apologize upfront. I normally don't complain. Even though I'm an only child, I normally suck it up and do it. But this gluten free diet SUCKS! Sorry - really am. I know I'm working on little sleep and feeling terrible, but I really need to vent. You guys are here and willing to read. I will spare my family.

I have been celiac disease for 3 months. Never had symptoms before, they found out through a series of tests in which they originally diagnosed me with lymphoma. So, now that I have been gluten free I have had the worse case of bloating, gas, heartburn, insomnia. WHat is that about?! One positive thing is that I managed to gain 15 lbs. and the doctor wants to see some more, but hopefully that will slow down. I don't want to feel this way and I would rather go back to eating gluten. I felt better then, even though I know I am doing damage to my intestines. I won't eat gluten, don't worry - I'm a mom, but really? Is this normal? Will this pass? Do I need to have allergy testing done to see if I'm allergic to something? Any advice will be read and cherished.

Thank you for listening to my whine. You may now go get your life back!

Wendi

[GlutenFreeManna]

What are you eating? Give us a run down of your typical meals and snacks and maybe we can make suggestions of what to cut.

Also, I know you're not going to want to hear this, but, have you tried cutting out dairy as well? Many people are temporarily lactose intolerant when they first go gluten free. The good news is if you cut it out for a while, you may be able to add some back in later. After 5 or 6 months dairy free I was able to have yogurt (which has very little lactose) and hard cheeses. I'm 7 months gluten free now and I still can't do cow's milk or ice cream, but there are tons of substitutes that satisfy just as much. If it's not dairy, soy is a another big one that people have problems with.

[curiousgirl]

I am going to apologize upfront. I normally don't complain. Even though I'm an only child, I normally suck it up and do it. But this gluten free diet SUCKS! Sorry - really am. I know I'm working on little sleep and feeling terrible, but I really need to vent. You guys are here and willing to read. I will spare my family.

I have been celiac disease for 3 months. Never had symptoms before, they found out through a series of tests in which they originally diagnosed me with lymphoma. So, now that I have been gluten free I have had the worse case of bloating, gas, heartburn, insomnia. WHat is that about?! One positive thing is that I managed to gain 15 lbs. and the doctor wants to see some more, but hopefully that will slow down. I don't want to feel this way and I would rather go back to eating gluten. I felt better then, even though I know I am doing damage to my intestines. I won't eat gluten, don't worry - I'm a mom, but really? Is this normal? Will this pass? Do I need to have allergy testing done to see if I'm allergic to something? Any advice will be read and cherished.

Thank you for listening to my whine. You may now go get your life back!

Wendi

Hi Wendi! I'm new to this life-style, too. Diagnosed mid-May and I can see it's going to be a bumpy ride. Hopefully not a long and bumpy ride, though, as I'm scurrying to find anything I can on this disease and gluten-free eating. I thought it was going to be easy just cutting out food with gluten...just eating "clean" as they say. But, for me, there have been other allergies popping up...things that I would never have imagined I'd be allergic to.

It's difficult for me to be diligent since I want to slip back into denial when something becomes confusing (like understanding food labels, and all the scientific names they use and wondering if there's gluten within those scientifically named ingredients). But, I keep reminding myself to EAT CLEAN...fresh food...no canned, no frozen, no bottled.

I've been getting lotsa information from this site and am so thankful it exists!

[sahm-i-am]

What are you eating? Give us a run down of your typical meals and snacks and maybe we can make suggestions of what to cut.

Also, I know you're not going to want to hear this, but, have you tried cutting out dairy as well? Many people are temporarily lactose intolerant when they first go gluten free. The good news is if you cut it out for a while, you may be able to add some back in later. After 5 or 6 months dairy free I was able to have yogurt (which has very little lactose) and hard cheeses. I'm 7 months gluten free now and I still can't do cow's milk or ice cream, but there are tons of substitutes that satisfy just as much. If it's not dairy, soy is a another big one that people have problems with.

GFManna - Yes, I'm in total denial about the dairy - I probably need to cut it out to see if that helps. Is there a test they can do for that to see if a person is? My mom and I have just started baking gluten-free and getting used to this lifestyle change. I hate to throw another monkey in the works! But, I need to put on my big girl pants and deal with it. Thank you for the encouragement.

Wendi

[GlutenFreeManna]

GFManna - Yes, I'm in total denial about the dairy - I probably need to cut it out to see if that helps. Is there a test they can do for that to see if a person is? My mom and I have just started baking gluten-free and getting used to this lifestyle change. I hate to throw another monkey in the works! But, I need to put on my big girl pants and deal with it. Thank you for the encouragement.

Wendi

Were you diagnosed with a biopsy of the small intestines? If your biopsy results showed any villi damage at all that is an indication that you will be lactose intolerant. The villi in you intestines produce lcatase, which you body needs to break down lactose. If you have damaged villi then you won't be able to produce enough lactase to break it down, hence the bloating, gas, and cramping. When you eat cheese or drink milk you are giving your body food it can't digest. Over time your intestines may heal and you may be able to add it back in.

Also since you mentioned you have been baking gluten free more be very careful about what gluten free grains you use and how much gluten free baked good you consume. Recent studies have been posted on these boards showing that many gluten free grains are cross contaminated. There are people on this board that cannot eat anything made with gluten free flours because they are hype-sensitive to CC. So you might want to keep a food diary and log what you eat and how you feel each day. Some reactions can be delayed for up to 72 hours after you eat so it's hard to track down what is making you feel bad if you don't have it all written down.

Lastly, I hope your Lymphoma tests all show up negative, but I'm sure your oncologist has already told you that type of cancer is one that untreated celiacs can develop. All the more reason for you to eat mainly a whole foods diet--as many fresh fruits and veggies and hormone/antibiotic free meats as possible. Try to stay away from sugary stuff and processed stuff, even though there is a lot of processed stuff that is gluten free, that doesn't mean it's good for you to eat it everyday.

[sahm-i-am]

You are both right - I need to eat clean and fresh. The intestinal biopsy showed a very small amount of villi damage at the very top of my small intestines but most of the intestines looked great. He said it is very rare to diagnose someone Marsh stage 1 but that is what I am. It is interesting because you would think that if I had so little damage done why was I so malabsorbed? He still thinks something else is going on since my intestinal wall and lymph nodes are still enlarged. Lymphoma has been ruled out, but they are keeping a close eye on it. They had a hard time with my biopsies from the lymph nodes in my abdomen.

So, today I started taking dairy out of my diet - not easy, but hey, if we can do the gluten-free diet this should be easy, right? I think I'll turn into a bunny for a while and eat salads and fruits. Lord help me if I develop some reaction to fructose and other such issue that I've read about!

Thank you ladies - you have been a source of comfort. Today is a new day and my pity party is over! And I slept good last night - that always help!!!

Take care,

Wendi

[vbecton]

Wendi, glad you are feeling better! I am 3 months into this diet as well. I was in big denial about dairy, but I let that go (tears streaming down my face). I'm a clean eater (aside from the mysterious cupcakes that landed in my belly), mostly all organics, yada yada yada, but I'm still experiencing major bloat, gas and other fun intestinal things. When I was on gluten my symtoms weren't anything compared to what I've got going on now. I've cut out gluten, diary, soy, corn, processed foods, and nightshades. Not sure what else I could cut out, but I sure hope this gas gets better soon or my hubby will probably want to move out

I'm starting to sound like a drag, but I guess I'm saying I understand. This gets very frustrating. I feel like a guinea pig. I look forward to the day when I can eat foods covered in baked cheese...ummmm

[sahm-i-am]

Wendi, glad you are feeling better! I am 3 months into this diet as well. I was in big denial about dairy, but I let that go (tears streaming down my face). I'm a clean eater (aside from the mysterious cupcakes that landed in my belly), mostly all organics, yada yada yada, but I'm still experiencing major bloat, gas and other fun intestinal things. When I was on gluten my symtoms weren't anything compared to what I've got going on now. I've cut out gluten, diary, soy, corn, processed foods, and nightshades. Not sure what else I could cut out, but I sure hope this gas gets better soon or my hubby will probably want to move out

I'm starting to sound like a drag, but I guess I'm saying I understand. This gets very frustrating. I feel like a guinea pig. I look forward to the day when I can eat foods covered in baked cheese...ummmm

I hear ya, Vbecton! I look at people in a new light now - those free to choose whatever they want to eat. I feel like a scientist analyzing everything that goes into my mouth and recording results. Like this afternoon - I was feeling good. Had a bunch (small bunch) of red seedless grapes and WHAM! gas, bloating, totally wiped out! What is that?

If I'm gonna blow up eating healthy I may as well blow up eating a Krispie Kreme donut! Just kidding, but seriously, sometimes I wonder.

Good to know we are not alone!

Wendi

[vbecton]

Had a bunch (small bunch) of red seedless grapes and WHAM! gas, bloating, totally wiped out! What is that?

ME TOO! It seems to happen everyday between 10-11am no matter what I eat. I even cut out eggs 3 days ago thinking that was my new culprit. UHHHH. But, no, the gas loves me so much it just keeps showing up. Everyday. Like a stalker. I have no idea what causes this, but I'm trying to figure it out

[T.H.]

I hate to say it but...that sounds an awful lot like fructose malabsorption. It's a condition that, they think, might occur in folks with gut issues, like celiacs, IBS, etc... There's some information about it here, and what foods set it off:

Open Original Shared Link

But, some other possibilities? (just throwing out anything that comes to mind, here)

How well did you wash the grapes? They could have been looked over by someone with gluten on their hands and been contaminated.

You could have a problem with sulfites (some info. on that here: Open Original Shared Link ) this article mentioned that fresh grapes can have a fungicide with sulfites sprayed on them.

speaking of - you could be having a problem with the pesticides used on the grapes. Were they organic or conventionally grown?

And...that's all that comes to mind. So sorry this is happening to you - hard enough to lose the gluten, and when other stuff goes crazy, it honestly feels so darn frustrating, yes? Hope this resolves for you soon!

I hear ya, Vbecton! I look at people in a new light now - those free to choose whatever they want to eat. I feel like a scientist analyzing everything that goes into my mouth and recording results. Like this afternoon - I was feeling good. Had a bunch (small bunch) of red seedless grapes and WHAM! gas, bloating, totally wiped out! What is that?

If I'm gonna blow up eating healthy I may as well blow up eating a Krispie Kreme donut! Just kidding, but seriously, sometimes I wonder.

Good to know we are not alone!

Wendi

[vbecton]

I hate to say it but...that sounds an awful lot like fructose malabsorption. It's a condition that, they think, might occur in folks with gut issues, like celiacs, IBS, etc... There's some information about it here, and what foods set it off:

Sign me up for the looney bin now . I just read this sight and it was very informative about fructose malabsorption. Strange thing is one of the main needs for digesting fructose are amino acids...of which I am low in. DANG IT!

I'm going to try the 72 hour elimination of fructose just to see if my symptoms resolve any. Is this simply a diet and response thing, or is this something my GI doctor could test me for?

But, if mine happens to be a fructose problem and not a problem with all the other things I've cut out, then I'm having a food reintroduction party