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Help/advice/wisdom Please/not Feeling So Great

klynnk

By klynnk
in Coping with Celiac Disease

Recommended Posts

klynnk Newbie
klynnk
Posted

I'm on my third week and have started to feel not so great AGAIN. In the first week I was feeling incredible or as I felt how "normal" people should feel (does that make sense?) I don't want to give up if this is just a bump in the road. Does anyone have some advice that might help?

Thanks.

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Takala Enthusiast
Takala
Posted

It's a bump in the road.

Or you can yo yo back and forth, and get told over and over again, the reason you feel crummy and have all these OTHER diseases and problems is that you ignored your gluten free diet.

After time you may become more aware of what else is accidentally cross contaminating you, or that you have additional food intolerances. Lactose (milk sugar, may go away with healing), casein (milk protein, you may have to find dairy substitutes) and soy are biggies. Some people also react to things like corn, or tapioca, or potatoes (nightshade family), or even flax or buckwheat. Sometimes you find out that what you "thought" was a safe gluten free food is not really. Mastering the diet that is individually compatible with yourself may take some time.

klynnk Newbie
klynnk
Posted
  • Author

Thank you for your reply. In my three weeks I've been strict about no wheat/no gluten but have been lenient if something may have been made with or near, etc wheat or gluten. I would sure hate if I had to give up dairy, corn, potatoes..that really doesn't leave me with much : ) Also, regarding soy. I get confused about this. Why will something say gluten free but have soy in it? Am I wrong?

Thanks again.

AJoy Rookie
AJoy
Posted

I was diagnosed in October and my first week was great also but week two and three I went through a tough period of withdraw. I was okay for a week or so and then last week I had extremely bad fatigue - all I wanted to do was sleep all the time, experienced dizziness, and felt delirious. This week I feel MUCH better but still not 100%. My doctor put me on D and Iron supplements so I guess that is helping. Have you had you levels checked?

Bobbie Jo Rookie
Bobbie Jo
Posted

Don't give up! It's worth it! And it really does get easier. It took me awhile to figure out that I was getting gluten accidentally from different sources - like the fries at a fast food place, the hot sauce at a mexican food restaurant and my son, who is also gluten sensitive, was greatly disappointed to discover that the "malt flavoring" in his Rice Crispies had gluten.

We have found good ways to substitute all of these things. Not the fast food fries, but who needs them anyway. We will make fries at home. We also ASK now before eating the hot sauce (and the restaurant has a gluten free sauce), and we found "Rice Twice" cereal at the health food store that my son likes.

mushroom Proficient
mushroom
Posted

Also, regarding soy. I get confused about this. Why will something say gluten free but have soy in it? Am I wrong?

Thanks again.

Gluten is gluten and soy is soy, and n'ere the twain shall meet. However, intolerances to them are often co-travellers, and soy is a common ingredient substitute in gluten free foods. So if you are intolerant of both then you are much more restricted.

rosetapper23 Explorer
rosetapper23
Posted

Do you take any medications or supplements that might have gluten in them? Sometimes you have to call the manufacturer directly, since they don't list gluten on the jars. Also, remember that gluten is in beer, soy sauce, and in some seasonings. Lastly, you may be ingesting some gluten from your shampoo or conditioner. If you're a woman, skip the lipstick, since gluten is definitely in lipstick.

Also, regarding soy, soy does NOT have gluten in it; however, many people with celiac are unable to tolerate it. Others can't eat dairy or oats.

Don't give up--you're very close to finding your answers. If you stick to whole foods and cook everything yourself, you should be able to identify any more allergens and eventually begin feeling better.

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klynnk Newbie
klynnk
Posted
  • Author

I'm so glad many people took the time to reply. THANKS to all. I need to get out my Gluten free for Dummies book again. I haven't gotten tested but have an appointment at the end of December even though I've read how many don't test positive. I'm sure I'm at least gluten sensitive. Is cross contamination or just a smidgen of gluten i.e. the hot sauce, etc. really that serious. I know the answer is going to be yes but I still can't wrap my head around that but will need to right? My main issues have never been too heavy on the stomach part .. not sure of all the abbreviations yet but not much D. My main issues have been nausea, fatigue, dizzy, foggy, aches & pains, headaches and bloating & depression/anxiety (depression & anxiety because of all the things I wrote before it) I thought I was always eating healthy but as someone put it the other day "veggie sandwich between 2 slices of poison" I really think I've been doing well considering how much wheat I ate before to go to none. In the past couple weeks I have not given up corn or potatoes. Should I stay the course? Past three days have been hard. I wish I could eat at the restaurant Native Foods for breakfast, lunch & dinner. : )

Bobbie Jo Rookie
Bobbie Jo
Posted

Is cross contamination or just a smidgen of gluten i.e. the hot sauce, etc. really that serious. /// Should I stay the course? Past three days have been hard. I wish I could eat at the restaurant Native Foods for breakfast, lunch & dinner. : )

I feel for ya!!! The pros on this site will guide you. But all I can say - I get a smidgen of gluten and I get the burning, bloating and gas. I even did one little bite of a communion wafer Sunday and got gas - !!! So, the body has to heal again. We have stomach cancer in our family, so I'm all about looking at this like poison. Even a crumb.

Hopefully you can figure out something to eat at that restaurant. I'm surprised how many places have a list of gluten-free foods on their menu if you ask (like Chilis).

mushroom Proficient
mushroom
Posted

It is so ironic that the body of Jesus is represented by gluten, a poison to so many of his children :unsure:

Chiana Apprentice
Chiana
Posted

Apparently a new 'negligibly gluten-containing' wafer is on the market...though, it's probably not easy to get a hold of, and it still might cause problems.

Strangely enough, I found out yesterday that in the Jewish faith you are not allowed to endanger your health to fulfill a commandment. That is very celiac-friendly. :)

klynnk Newbie
klynnk
Posted
  • Author

I feel for ya!!! The pros on this site will guide you. But all I can say - I get a smidgen of gluten and I get the burning, bloating and gas. I even did one little bite of a communion wafer Sunday and got gas - !!! So, the body has to heal again. We have stomach cancer in our family, so I'm all about looking at this like poison. Even a crumb.

Hopefully you can figure out something to eat at that restaurant. I'm surprised how many places have a list of gluten-free foods on their menu if you ask (like Chilis).

Thanks - I meant breakfast, lunch & dinner at the restaurant Native Foods because it is Vegan and has a WONDERFUL gluten free menu. They make everything taste great and well it's a restaurant..sit down and get served. : ) Thanks again for all your help I can't say enough at how helpful everyone is.

WheatChef Apprentice
WheatChef
Posted

The upper limit for declaring something gluten free is that it contain no more than 20 ppm of gluten. This is roughly the equivalent of 1/2 of a single drop of water in a 1 liter bottle. Since a 1 liter bottle is quite a bit over a single serving you then start looking at a limit that is potentially in the hundredths of a drop of water measurement. On a weight basis if you're considering a 1/2 lb meal then the limit would be about 0.0000022 grams wherein 1 gram is around the weight of a paperclip. This means that yes we are dealing with a very small amount! This is why it helps to be vigilant about avoiding cross contamination from shared surfaces and equipment, you won't really know till later on in your gluten-free life exactly how sensitive you happen to be but you wouldn't be doing yourself a favor to constantly be exposing yourself to concentrations which you may be sensitive to during your healing phase.

FooGirlsMom Rookie
FooGirlsMom
Posted

Hi there,

I just wanted to chime in and say "your singing the same tune I was a week ago". I felt like a million bucks the first week after going gluten-free. I had a ton of energy & felt nomral for the first time in a long long time. (Years) Then all of a sudden it seemed like my symptoms returned at about 1/2. Plus I had the big D (which I rarely had when nonGF). I started to hunt down what the issue could be. I'm better but still hunting for the big D issue and it might be my Omega 3,6,9 pills I love so much. (boohoo)

I thought I was treating systemic yeast about 18 years ago and went on 2 diets (both gluten-free and diary free without realizing they were) and I remember it was completely normal to feel good for a few days and then bad for a few. Depending on how bad of shape my body was in (controlled symptoms for 15 years with these 2 diets) it could last anywhere from 2 weeks to 3 or 4 months. I'm still going through it too and have to keep reminding myself.

Becasue I felt like I was dying for the past year (seriously I did) to feel normal for a week was so exhilarating that when I crashed back down a bit I literally cried. (I'm not a real emotional person) so that tells you how it hit me.

Hang in there. We're all fighitng htis battle uphill to wellness. :)

FooGirlsMom

Bobbie Jo Rookie
Bobbie Jo
Posted

It is so ironic that the body of Jesus is represented by gluten, a poison to so many of his children :unsure:

Oh my sweet friend Shroom - don't tell me that you think we're poison! (Although many of the false Christians are :( - as are those who get trampled on by temptation )

mushroom Proficient
mushroom
Posted

Oh my sweet friend Shroom - don't tell me that you think we're poison! (Although many of the false Christians are :( - as are those who get trampled on by temptation )

No, No, I said it is sad that in order to practice our faith we have to poison ourselves. No comment on people at all :o

Loey Rising Star
Loey
Posted

I'm so glad many people took the time to reply. THANKS to all. I need to get out my Gluten free for Dummies book again. I haven't gotten tested but have an appointment at the end of December even though I've read how many don't test positive. I'm sure I'm at least gluten sensitive. Is cross contamination or just a smidgen of gluten i.e. the hot sauce, etc. really that serious. I know the answer is going to be yes but I still can't wrap my head around that but will need to right? My main issues have never been too heavy on the stomach part .. not sure of all the abbreviations yet but not much D. My main issues have been nausea, fatigue, dizzy, foggy, aches & pains, headaches and bloating & depression/anxiety (depression & anxiety because of all the things I wrote before it) I thought I was always eating healthy but as someone put it the other day "veggie sandwich between 2 slices of poison" I really think I've been doing well considering how much wheat I ate before to go to none. In the past couple weeks I have not given up corn or potatoes. Should I stay the course? Past three days have been hard. I wish I could eat at the restaurant Native Foods for breakfast, lunch & dinner. : )

Welcome to the forum. Here's a list of medications that are supposed to be gluten free. As with everything else we need to carefully read the labels. Also, I have discovered many foods that are gluten free that I am intolerant to. It is an individual thing. I've discovered that I have a lot of food allergies.

You've found the best place in the world to come to with questions and just to vent. I don't know what I did before I found this wonderful, wise and caring group of people.

Loey

Open Original Shared Link

Loey Rising Star
Loey
Posted

I'm so glad many people took the time to reply. THANKS to all. I need to get out my Gluten free for Dummies book again. I haven't gotten tested but have an appointment at the end of December even though I've read how many don't test positive. I'm sure I'm at least gluten sensitive. Is cross contamination or just a smidgen of gluten i.e. the hot sauce, etc. really that serious. I know the answer is going to be yes but I still can't wrap my head around that but will need to right? My main issues have never been too heavy on the stomach part .. not sure of all the abbreviations yet but not much D. My main issues have been nausea, fatigue, dizzy, foggy, aches & pains, headaches and bloating & depression/anxiety (depression & anxiety because of all the things I wrote before it) I thought I was always eating healthy but as someone put it the other day "veggie sandwich between 2 slices of poison" I really think I've been doing well considering how much wheat I ate before to go to none. In the past couple weeks I have not given up corn or potatoes. Should I stay the course? Past three days have been hard. I wish I could eat at the restaurant Native Foods for breakfast, lunch & dinner. : )

If you are already following a gluten-free diet the tests might come up negative. It depends on whether or not you want a doctor to confirm the diagnosis.

Loey

Bobbie Jo Rookie
Bobbie Jo
Posted

No, No, I said it is sad that in order to practice our faith we have to poison ourselves. No comment on people at all :o

Ohhh! Got ya. It is sad. I think next time I'll just have my husband eat mine or something.

:)

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