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So Frustrated!

henny

By henny
in Related Issues & Disorders

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henny Explorer
henny
Posted

Although the gluten free diet has made a huge improvement in my GI and overall health, I am getting really frustrated with all the new issues that are cropping up!

I'm 4 months gluten free.

The first month was heaven!

The second month I found that when glutened my reaction was waaay worse than it used to be...OK, gotta live with that. Only a problem when I travel but OK.

The third month I suddenly became lactose intolerant - even butter gives me problems. Ok, so I cut that out (not terribly hard to do except when traveling)

Now in the fourth month I am suddenly allergic to all kinds of things! I have huge burning itchy rashes from soaps, laundry detergents, lotions, even hydrocortizone cream burns my skin! I keep switching things and getting rid of one rash and before you know it I have another rash from another source.

I feel like my immune system used to be preoccupied with reacting to gluten and now that it's not so busy it's wreaking havoc on all my other systems. When does it end?

I'm a little testy also because I travel for business quite a bit and over the weekend had a terrible glutening despite my best efforts. UGH! This is IMPOSSIBLE~!

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ksymonds84 Enthusiast
ksymonds84
Posted

Sorry Henny that you are going through some tough times. I am gluten free over a year now and still have some bad days. Lactose Intolerance hit me too around 4 months and I still haven't been able to add it back. I am not sure of your age, but I am over 40 and have read that for adults it can take up to two years for the villi to heal. I too have had other food intolerances and the eczema comes back right away if I get glutened or try to do dairy. The thing that has helped me lately is to not over analyze all my symptoms with what I ate ect. I was driving myself crazy trying to find the answer and sometimes there just isn't one. I do my best to be gluten free and watch for cc and avoid dairy but I am also concentrating on eating healthy (I've added in so many gluten free treats this past year) limiting fats, fried food, caffeine, carbonated beverages, alcohol, highly acidic foods and anything else that is irritating to the GI tract, and that seems to be working. When your intestines are not healed yet, they can react to any of these triggers. Hugs to you because I know how frustrating it can be when you just want to be normal again!

GFinDC Veteran
GFinDC
Posted

Hey Henny,

I found the same thing, my reaction got much more pronounced after a while off gluten. I'd been lactose intoleraant for 10 years already so no change there. Some people avoid gluten containing lotions etc, some people say it doens't matter. I try to avoid them myself.

I think your theory about your immune system finding new things to react to might make some sense. Some people seem to develop new food intolerances after going gluten-free.

I started taking DPP 4 when I eat out (which is seldom). It is supposed to help digest the gliaden protein in gluten. It seems to help me with small amounts of gluten at least. I also use black pepper and nutmeg on foods and some turmeric. Black pepper and nutmeg are supposed to reduce permeability of the intestine, and turmeric is supposedly good for reducing the immune reaction. Hot peppers incrase the intestinal permability.

It takes some time to learn all the little gotchas on this diet for sure. It's not impossible though! I like to think of it as challenging. :)

henny Explorer
henny
Posted
  • Author

thanks guys :)

good advice about not over-analyzing....I need to focus on the fact that overall I'm MUCH better...the daily crippling stomach pain and fatigue is gone unless I make a mistake - which isn't too often.

WHAT is DPP-4? I travel a lot and can't always be sure about cross contamination or non-obvious ingredients. Something to help with trace amounts would really make a huge difference in my quality of life!

ksymonds84 Enthusiast
ksymonds84
Posted
thanks guys :)

good advice about not over-analyzing....I need to focus on the fact that overall I'm MUCH better...the daily crippling stomach pain and fatigue is gone unless I make a mistake - which isn't too often.

WHAT is DPP-4? I travel a lot and can't always be sure about cross contamination or non-obvious ingredients. Something to help with trace amounts would really make a huge difference in my quality of life!

I use the Enzymedica's GlutenEase, it has DPP-IV activity. It is a protease enzyme which helps break down caseine and gluten. I only use it when going to a restaurant or to someone's house. I found it to be of benefit such as only getting a little gas instead of the whole shabang in symptoms if accidentally glutened. Its meant to be a a little safegard not a cure. For those wondering if you can use it to cheat the answer is NO. :(

GFinDC Veteran
GFinDC
Posted
I use the Enzymedica's GlutenEase, it has DPP-IV activity. It is a protease enzyme which helps break down caseine and gluten. I only use it when going to a restaurant or to someone's house. I found it to be of benefit such as only getting a little gas instead of the whole shabang in symptoms if accidentally glutened. Its meant to be a a little safegard not a cure. For those wondering if you can use it to cheat the answer is NO. :(

Here is another thread on DDP-IV Henny.

https://www.celiac.com/gluten-free/index.php?showtopic=7687

I totally agree that it is best used where there is a small amount of gluten, as in cross contamination. I also don't think it would be good for cheating!

Here is a Youtube talking about enzymes in general.

Enzymes in Control

Here is another vid by the same people talking about DPP-4. They say the same thing, that it is helpful for small amounts of gluten.

Managing Gluten Sensitivity

So if you are eating out it might help to take some DPP-4 before the meal. I don't know about any studies on the saftey of DPP-4 for celiacs. I did get glutened not long ago (CC) and took some DPP-4 afterwards. The pain in my gut went away in a couple hours vs an all-nighter. So I think it can help. If I had known I was going to get cc, I would have taken it before hand and maybe it would have prevented the whole situation. So now I take it when I think there is any chance of CC. It is supposed to help break down casein protein in milk also. My DPP-4 came from Vitacost online store. My sister who is a very smart celiac got it for me. Sister's are the best! :)

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