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Losing Hope
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Next week it will be 6 mos since I've been gluten free, and I'm still feeling very sick off and on with flu like symptoms. It's been 6 weeks since I last had the most recent food that gave me the same reaction as gluten. There doesn't seem to be any indication that I'm directly reacting to something. I start to feel better, then sick again. Today fruit is the only thing that my body likes. I had to call in sick today.

Is it normal to be having these symptoms still? Feeling scared I may have something else wrong with me. My thyroid tests all came back negative but my ND isn't convinced they were accurate. She still thinks something else is wrong. Doctors don't like not having definite answers.

I really need opinions. I'm freaking out a little here and losing hope.

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I've been on the gluten-free diet for 14 months and still have issues. From what I've read a lot of people have food intolerances that can mimic symptoms that gluten would cause. Apparently there are tests for other foods you can react to. You might also want to look into the specific carbohydrate diet (SCD). I've been doing that for awhile and it helps but I'm afraid I'll never get off it. I too wonder if there are other issues going on but my GI doc thinks it is all celiac related. Have you had a follow-up blood test for gluten yet?

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I tested neg on the Celiac blood test both times, before and after stopping gluten. There are very few foods I can tolerate. The only carbs I eat are pinto beans. The only other foods I eat are nuts, seeds, fruit and vegetables - that's it! I reacted to everything else I tried. I only drink water and apple juice. I never eat out or eat processed foods. I make everything myself.

I know it takes a long time to heal, so that's fine if it's still the problem. I'm starting to wonder because I feel really good some days, then terrible again with no apparent connection. Maybe my intestinal lining is still really messed up and that's all it is. I eat organic veg, but not organic fruit (harder to find), but I feel best after eating fruit, organic or not. I'm not being impatient, just wanted to get a reality check from some other people on here.

I've been so tired I haven't carefully checked my non food products for gluten, I feel so overwhelmed with the thought of that task, but I use the same things everyday, and some days I feel completely normal with no symptoms.

Thanks so much for responding. I'm having terrible anxiety with my symptoms right now.

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I certainly understand the anxiety over symptoms, I have it too. I would really suggest looking at the SCD if you haven't already and see if it makes sense for you. Just trying the intro diet you may find things are better. A lot of the foods you mentioned eating SCD says are difficult to digest if you have digestive problems. There's lots of info online and I first heard about this from someone else on this forum. Good luck!

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I like fruit too. But it is high in sugar. It is possible you are getting a spike and crash! I make sure to have fruit only with protein and fat at mealtime.

Are you taking supplements? Vitamin B gave me quite a perk in addition to all others I am taking.

It is possible you need more time. Me too, at 5 months grain free. Sometimes, I wonder if we can really tell anything yet, but other times I feel like of coarse we can. When one reacts to something and reviews everything odd they have eaten lately there is a good chance to peg it. I do think our bodies are just kind of grinding on it all still and there is no new cause to the symptoms we experience.

Diana

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Sara...I don't really know enough to give an opinion. I know my intestinal tract was really messed up and is still healing but sometimes I get anxious thinking something else must be going on. I do think it may be a good thing if you have some days that you feel normal.

The best I can give you is some support and say I'm sorry you are feeling so anxious as I can identify with that. And I wanted to tell you that those 2 quotes you have under your signature have been a support and a help to me. I think of them every night and go to bed with the hope that tomorrow might be a better day. So thank you for that and I hope that tomorrow will be a better day for you. Hang in there. :)

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I'm also by no means an expert here, but like you, I have been gluten-free since Feb. this year. Tested negative for Celiac but reacted severely to two gluten challenges. Right now I am feeling awesome and I hate to admit it but it is no doubt to eating meat. A month ago I decided to start following the paleo/primal diet. I have been a vegetarian for many years so this was not something I really wanted to do. However, I do feel much much better. I basically eat some sort of protein (egg, fish, chicken, etc) at every meal with vegetables. I just finished lunch which was salmon with raw cucumber and carrot in a peanut dipping sauce I made. I am not eating any other grains (I want to lose weight!). Just following my protein/veggie route I feel much better. I also have much less stress in the kitchen because it is easy to eat this way. I think the nourishment to my body as well as relieving stress over "what am I going to eat" has really helped me.

Also, I am in the middle of reading the book Wheat Belly. He talks a lot about the adverse effects of sugars. I can't help but think the fruit is doing more harm than good to your healing. Try some proteins and see how you feel.

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Right now I am feeling awesome and I hate to admit it but it is no doubt to eating meat. A month ago I decided to start following the paleo/primal diet. I have been a vegetarian for many years so this was not something I really wanted to do. However, I do feel much much better. I basically eat some sort of protein (egg, fish, chicken, etc) at every meal with vegetables.

I can't help but think the fruit is doing more harm than good to your healing. Try some proteins and see how you feel.

Thanks all for your support!

Pauliewog, thanks, I agree that meat would help a great deal. I haven't been able tolerate proteins lately except nuts, seeds and beans due to my intolerances and extreme constipation (I've tried everything). I tried meat 2 months ago, with bad results. I've started craving meat now though, which didn't happen when I could eat it before, so I may try a small amount again. My body may be telling me something. Thanks for the reminder.

Feeling much better today after I finally got things moving again. I can get so backed up, anything other than fruit makes my stomach extremely upset, but I can have my usual nuts again today. My goal is more protein, and I keep trying to cut back on the fruit because of the sugar. I'm going to get there, it's taking time for my body to allow the foods I want to put in it.

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Me too, on getting backed up, and having extreme constipation. Sometimes when I think it might be too much gas in my system I take what someone suggested on here (1/2 teaspoon baking soda in half a glass of water) and it has helped to move things some. Other times I take Senna Leaf tea or Organic Smooth Move tea. The digestive disease doctor told me to only take Milk of Magnesia but it usually only goes around everything giving me some diarrhea and still leaving me constipated.

For both getting protein and fiber I eat quinoa. In the morning I eat a hot cereal using Quinoa Flakes and put some brown sugar or maple syrup on it. And I usually eat the regular quinoa which you have to rinse before cooking for dinner.

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Next week it will be 6 mos since I've been gluten free, and I'm still feeling very sick off and on with flu like symptoms. It's been 6 weeks since I last had the most recent food that gave me the same reaction as gluten. There doesn't seem to be any indication that I'm directly reacting to something. I start to feel better, then sick again. Today fruit is the only thing that my body likes. I had to call in sick today.

Is it normal to be having these symptoms still? Feeling scared I may have something else wrong with me. My thyroid tests all came back negative but my ND isn't convinced they were accurate. She still thinks something else is wrong. Doctors don't like not having definite answers.

I really need opinions. I'm freaking out a little here and losing hope.

You're situation sounds a lot like mine, except mine are mainly GI symptoms. (Everyone's reactions are different, but the culprit is the same.) I was gluten free for a year, with VERY little changes noted. I've started the specific carbohydrate diet (SCDiet) less than a week ago, and I've already noticed huge improvements, considering it's only been 6 days!

Just something to consider.

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I have been gluten free since april with not too much improvement in GI symptoms. I reached out for an allergy test and when I spoke with the doctor there, she stated that I really should be on a bland food diet. Since going gluten-free i have been eating fruits, vegetables, nuts, and meats constantly. I have lost 25 lbs from the diet but my intestinal tract has not been happy at all. She stated a few things:

1. Fruits that are high in acid are really not helpful to heal an inflamed gut

2. Raw vegetables are too hard to digest

3. Nuts are extremely hard to break down in an inflamed gut

4. Red meats should be avoided.

5. Coffee and Alcohol should be cut out

She stated that I should be eating a diet heavily weighted towards simple, "mushy" foods. Such as bananas, vegetables that are cooked down to be soft, potatos, lightly seasoned chicken and fish, etc. basically baby food like things until I feel better down there.

I guess that is why I am responding to yuor post. It sounds like what I have just learned from this doctor is relevant to you since you seem to eat a lot of raw fruits, vegetables and nuts. I was surprised to learn that this diet could actually be extending the healing process, when I thought it was beneficial. I have just started the bland diet and hope it helps. Perhaps it would help you too.

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You really need to check those non food items. It"s not hard at all, use the search box on this forum. Type in gluten free "whatever type deodrant you use" start in your bathroom. gluten-free shampoo you use, do everything in your bathroom. toothpaste,lip stick. everything. Gluten hides everywhere, i been gluten-free for 9 months an only in the last month found it in wild bird seed an hair spray!!! After you get done with the bathroom, you can move onto the kitchen (cleaning supplies), laundry room, an don"t forget the refrigerator. It is time consuming but you"ll feel much safer afterwards!!!! I think you"ll be surprised where you find gluten.

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1. Fruits that are high in acid are really not helpful to heal an inflamed gut

2. Raw vegetables are too hard to digest

3. Nuts are extremely hard to break down in an inflamed gut

It sounds like what I have just learned from this doctor is relevant to you since you seem to eat a lot of raw fruits, vegetables and nuts. I was surprised to learn that this diet could actually be extending the healing process, when I thought it was beneficial. I have just started the bland diet and hope it helps. Perhaps it would help you too.

Uh-oh. This could be a problem for sure. My doc just suggested I cook my veggies. I felt good today after eating almonds, sunflower seeds, dried cranberries, and a smoothie (frozen mixed berries, water, apple juice, evap cane juice).

Then I ate a bunch of fresh grapes and feel terrible. I eat them all the time usually without noticing a problem. The fruit I eat daily that makes me feel great is watermelon, but I ran out today. I avoid all meat and bananas because I get such bad C. Sensitive to potatoes.

After I have a good cry, I'm going to check the acidity of grapes, and continue with the rest of my day. Thanks for the info.

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Thank you jnh38, for your list of foods to avoid! No one had ever told me this. I am in the midst of experimenting with those foods, and your doctor is right on the money! I am so grateful for this information. Thank God for this Board, since the medics don't seem to know as much as they should about Celiac Disease! Of course, there isn't much left that I enjoy eating that is safe, but I will get by!

Kathy Robbins

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another thought, keep things basic. Don't overseason anything.

It took me forever to get over the major "C" i had after i started the diet.

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Uh-oh. This could be a problem for sure. My doc just suggested I cook my veggies. I felt good today after eating almonds, sunflower seeds, dried cranberries, and a smoothie (frozen mixed berries, water, apple juice, evap cane juice).

Then I ate a bunch of fresh grapes and feel terrible. I eat them all the time usually without noticing a problem. The fruit I eat daily that makes me feel great is watermelon, but I ran out today. I avoid all meat and bananas because I get such bad C. Sensitive to potatoes.

After I have a good cry, I'm going to check the acidity of grapes, and continue with the rest of my day. Thanks for the info.

(I'm not sure I'm posting this correctly...)

Hi Sarah,

I'm so sorry to hear you are still feeling lousy. It can be soooo discouraging! It is important to check your shampoo, makeup and cosmetics. I was having problems and couldn't figure it out until I realized my shampoo had wheat in it. Also, many people with Celiac react to casein and/or soy. I just discovered a soy problem, and the only physical symptom it has in common with my celiac is that it triggers my asthma.I just felt awful all the time and very exhausted. Soy is in everything from chewing gum to mayonnaise. Grrr!

Another place to look for problems might be if something you are eating is cross-contaminated. Gluten free grains can be grown in fields that were used for wheat, and millet or oatmeal might be grown near a wheat field or be processed on the same equipment or may travel in the same truck as non-gluten free grains. I also take Sun-Chlorella for energy and to remove the toxins from my body. I am very, very sensitive to wheat (and now soy) and I tolerate it very well. It keeps me from getting constipated and I do feel an increase in my energy. And no, they didn't pay me to say that :)

The biggest thing is to be patient, to be careful, and to listen to your body. Try keeping a food journal to trace what you eat. It can teach you a lot that you may not see otherwise. It took me almost a year before I really felt better, and almost two years before I felt strong again. And remember, among the celiac symptoms are anxiety and depression. Take a deep breath, cry when you need to and send your body all the love you can. You'll heal-

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Technically, oatmeal is gluten free but has a massive CC risk.

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There are very few foods I can tolerate. The only carbs I eat are pinto beans. The only other foods I eat are nuts, seeds, fruit and vegetables - that's it!

Carbs are also in nuts, seeds, fruits and vegetables.

??

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Me too, on getting backed up, and having extreme constipation. .

Please try this for the big C:

a TBLS. of ground flaxseed in 16 oz. of water 2X a day

probiotics

brown rice

apples

green leafy veggies: chard, collards, spinach

cruciferous veggies: broccoli, cabbage, brussel sprouts, cauliflower, bok choy,

64 oz. of water a day

water solves most C issues

hope this helps!

edited to add: If serious C continues and you develop other symptoms, (extreme fatigue, puffy face, hoarseness, weight gain) please be sure to have your thyroid checked.

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Next week it will be 6 mos since I've been gluten free, and I'm still feeling very sick off and on with flu like symptoms. It's been 6 weeks since I last had the most recent food that gave me the same reaction as gluten. There doesn't seem to be any indication that I'm directly reacting to something. I start to feel better, then sick again. Today fruit is the only thing that my body likes. I had to call in sick today.

Is it normal to be having these symptoms still? Feeling scared I may have something else wrong with me. My thyroid tests all came back negative but my ND isn't convinced they were accurate. She still thinks something else is wrong. Doctors don't like not having definite answers.

I really need opinions. I'm freaking out a little here and losing hope.

I am so sorry you have to go through this. I know the feeling. I can remember not even wanting to wake up anymore. I went recently to a holistic Doctor who did a complete allergy test on me. When it came back I was shocked to see all that I was allergic to. Did you know that every single symptom you feel in Celiac disease are also the same exact symptom that whey allergy causes.. Yepp Every thing dairy. And everything with whey. I felt horrible finding all of this out. I am even allergic to corn. Cornmeal, corn syrup and to top it all off. Being allergic to all of this and not knowing it.. caused a bodily yeast infection called Candida. I didn't know why i could eat and eat and still feel hungry. But its caused by candida. It blocks all the breakdown acids in your the stomach. So in turn it causes you not to be able to absorb vitamins that you desperately need. So Now I got that evened out as well. Look the point to the whole thing is.. there is hope. You can feel 100 % better. But it is pretty expensive to go to a holistic doctor. It costed me 2 grand for all the testing I needed. I now know the meaning to "you can't put a price on your health" My advice is to find one near you .. find one fast. you can live pain and symptom free. I will keep you in my prayers. God bless. ~Debi~

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I am so sorry you have to go through this. I know the feeling. I can remember not even wanting to wake up anymore. I went recently to a holistic Doctor who did a complete allergy test on me. When it came back I was shocked to see all that I was allergic to. Did you know that every single symptom you feel in Celiac disease are also the same exact symptom that whey allergy causes.. Yepp Every thing dairy. And everything with whey. I felt horrible finding all of this out. I am even allergic to corn. Cornmeal, corn syrup and to top it all off. Being allergic to all of this and not knowing it.. caused a bodily yeast infection called Candida. I didn't know why i could eat and eat and still feel hungry. But its caused by candida. It blocks all the breakdown acids in your the stomach. So in turn it causes you not to be able to absorb vitamins that you desperately need. So Now I got that evened out as well. Look the point to the whole thing is.. there is hope. You can feel 100 % better. But it is pretty expensive to go to a holistic doctor. It costed me 2 grand for all the testing I needed. I now know the meaning to "you can't put a price on your health" My advice is to find one near you .. find one fast. you can live pain and symptom free. I will keep you in my prayers. God bless. ~Debi~

When you say "allergies" do you mean IgE-mediated allergies?

Or do you mean food intolerances?

What kind of testing did this doctor do for $2K? :blink:

Just curious.

Allergy testing is covered by most insurance, that's why I am wondering.

Many celiacs avoid dairy for the first three-six months after DX because the villi are blunted and that's where lactase is produced and digestion may be difficult. So, yes a dairy intolerance may develop, but the majority of celiacs can add it back into their diets without any issues.

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