4 Weeks Gluten-Free And Not Seeing Improvement

[ClevelandGuy]

I have a positive blood test (TTg 66), and negative biopsy (full story Open Original Shared Link). I've been gluten-free since my biopsy. It's been 4 weeks now, and I'm really not seeing any improvement. [edit: My primary complain is overwhelming fatigue, which has not improved. Gas & bloating is better, but still having BMs 3-4 times daily.]

I'm beginning to doubt the possibility of it being Celiac/gluten intolerance.

I'm tempted to try a challenge to see if I feel horribly worse if I eat some wheat. At least then I'll know what I'm dealing with. What do you think? Should I try a challenge now at 4 weeks, or wait it out longer?

[txplowgirl]

No, I would keep trying to stay gluten free for another couple of months.

You could possibly be having withdrawals as well having reactions to possibly dairy and soy. I didn't start feeling better until about the 3rd month which was after I eliminated the soy and dairy. Also, have you deglutenized your kitchen? Differnt toaster, collander, cutting board, possibly nonstick pans. If your sharing a household with gluten eaters you are probably getting cross contamination. Also if you have pets, if their foods still have gluten, you can get cross contaminated from that and sharing kisses with your significant other if they haven't brushed their teeth. Plus, yes I know, even more. Some people have problems with gluten free processed products.

That's just a little, but hang in there

[Skylark]

Stick with it. You also have the low vitamin D which is a sign of malabsorption, and Hashimoto's thyroiditis, which is associated with celiac.

In a few more months you need to ask your doctor for follow-up testing with another anti-TTG test. I think testing at 4-6 months is typical. If the levels have fallen a lot, you'll know gluten was causing it.

Also, are you dairy-free? As txplowgirl says, most newly diagnosed celiacs who are still healing find they do better off dairy as well as gluten. You need your villi and a healthy intestine to digest it. Some are also sensitive to soy.

[ClevelandGuy]

No, I would keep trying to stay gluten free for another couple of months.

You could possibly be having withdrawals as well having reactions to possibly dairy and soy. I didn't start feeling better until about the 3rd month which was after I eliminated the soy and dairy. Also, have you deglutenized your kitchen? Differnt toaster, collander, cutting board, possibly nonstick pans. If your sharing a household with gluten eaters you are probably getting cross contamination. Also if you have pets, if their foods still have gluten, you can get cross contaminated from that and sharing kisses with your significant other if they haven't brushed their teeth. Plus, yes I know, even more. Some people have problems with gluten free processed products.

That's just a little, but hang in there

I'm still eating dairy. I actually tried giving it up, and just couldn't face breakfast without either a little yogurt or some milk in my (gluten-free) cereal. I did try soymilk recently, and that's perfectly acceptable over cereal, though perhaps problematic due to the soy. God, breakfast is so hard to do gluten-free.

I don't eat anything that can go in a toaster, so no worries there. Our cutting boards are plastic, and I'm very vigilant about washing them well. I did use a colander (for washing my veggies) recently that used to handle pasta, but stopped using it over a week ago.

Wow, if you didn't feel better until your third month then maybe I really do need a little more patience. It would be easier if I had a confirmed diagnosis, but I really feel like I'm just spinning my wheels here. I'll keep at it though.

Thanks for your response, txplowgirl.

[txplowgirl]

Hi There, yes it definetly took that long. I noticed you said gluten free cereals.

Would those happen to be the gluten free chex cereals? If they are they give some people reactions. They do me for sure. Also, your cutting boards could have scratches in them and you can't get the gluten out of them. In my opinion I would get a new one just to be on the safe side.

I don't have a dx, just decided one day to do it because of all the problems I had plus all the cancers that run on both sides of my family. Last count 34.

If I can do this anyone can. Just hang in there and it will get better.

[ClevelandGuy]

Hi There, yes it definetly took that long. I noticed you said gluten free cereals.

Would those happen to be the gluten free chex cereals? If they are they give some people reactions.

Yes, I was referring specifically to Rice and Corn Chex. They both say loudly "Gluten Free" right on the box, though I understand that that's something new. I eat them almost every day for breakfast. You have reactions to these cereals? Wow, what do you eat for breakfast?

[ravenwoodglass]

Yes, I was referring specifically to Rice and Corn Chex. They both say loudly "Gluten Free" right on the box, though I understand that that's something new. I eat them almost every day for breakfast. You have reactions to these cereals? Wow, what do you eat for breakfast?

You can go with eggs and bacon, a sandwich, leftover gluten-free food from the night before, etc. Breakfast doesn't have to be a breakfast type food. Just make sure you are getting some protein and perhaps carbs and a bit of fruit.

If you must have a 'breakfast' Bakery on Main makes some good granolas but I would read the label and avoid the ones with oats for now. If you like hot cereals Cream of Buckwheat is good and has a fair amount of protein. I also have an occasional Jimmy Dean Breakfast bowl or one of the Skillet breakfasts where you just add an egg. Not exactly health food but I haven't reacted to them.

[GlutenFreeManna]

Stick with it and try some new things. Some other milks you can try are: Rice milk, Almond milk, hemp milk or coconut milk. These are mostly shelf stable and sold in the baking aisle or the organic and natural foods sections of your store (coconut milk may be in the Asian food's section and will be in a can). Just check the labels carefully and make sure they are gluten free. They are best tasting when cold so put a carton in the fridge the night before opening. Another option is to try goat's milk, although I don't like it for cereal. It tastes more like buttermilk.

Also as someone else mentioned above, you don't have to eat breakfast-like food for breakfast. Sometimes I eat leftover rice for breakfast. Sometimes I slice up some raw bell peppers and dip them in hummus. I often have a hard boiled egg because it's easy and fast. I eat either an apple or a banana with peanut butter pretty often too. You could have leftovers from dinner the night before if you want. There's no rule that say breakfast has to be one type of food. I traveled to part of Europe one summer and stayed with a family in an area where they didn't even have cereal in the grocery stores. My host mom knew what cereal was because she had been to the states, but they didn't have it there. For breakfast she put out a spread of cold cuts, several cheeses, bell pepper slices, fresh sliced tomatoes, melon and some bread. Myself and the other American staying with them went for the bread with butter most often and sometimes made a sandwich with the other ingredients (this was pre-diagnosis for me). I noticed the family went for the fruit, veggies, cold cuts and cheese and just ate them plain, they didn't eat much bread. Later I found out she only put out the bread for us. It just wasn't something they usually ate for breakfast, but she knew our culture ate high carb breakfasts and it would be something more familiar for us.

[CarolinaKip]

Yes, I was referring specifically to Rice and Corn Chex. They both say loudly "Gluten Free" right on the box, though I understand that that's something new. I eat them almost every day for breakfast. You have reactions to these cereals? Wow, what do you eat for breakfast?

I have found there are a few gluten free products that I'm sensitive to. Chex being one of them, I did aliright with a glutino cereal. I eat eggs/boiled usually and fresh fruit for breakfast. I do well with Kinnikinnick products. Right now I'm trying not to eat many gluten free replacement foods.

[Skylark]

This diet is hard, no question. When you get up in the morning, you have to ask yourself whether your food preference is more important, or the chance to test for sure whether celiac is the cause of your crushing fatigue.

I tend to eat fruit and some cheese or a Larabar or a Kind bar in the morning. Sometimes I eat peanut butter on gluten-free toast because it's fast and something I really like. On the weekend, I make an omelette and gluten-free toast or huevos rancheros with corn tortillas (Mission brand is made on dedicated lines).

[March102010]

I'm on my fifth month but I still have no energy and I'm exhausted. I've been noticing I've been craving ice cream and fries like crazy. I have to eat one of them at least once a week. I will take your advice and take dairy out because that might be the culprit!

[ravenwoodglass]

I'm on my fifth month but I still have no energy and I'm exhausted. I've been noticing I've been craving ice cream and fries like crazy. I have to eat one of them at least once a week. I will take your advice and take dairy out because that might be the culprit!

Good idea with the dairy. I hope those fries are ones your cooking at home. If not make real sure that the restaurant only cooks frys in the oil and not gluten foods also and that the frys are for sure gluten free.

[txplowgirl]

Boiled eggs, turkey bacon, gluten free oats, leftover chicken and rice when i make it. Also, just a little warning rice dream milk has barley in it even though it dosent say so. It has supposedly been (distilled?. I can't remember the exact wording but i'm sure someone on here will give the right wording but some people react to it). Yes, me included.

Take care

[GFinDC]

These threads might have some brekky ideas too.

Help With Breakfast Ideas eating

Quick Breakfast Ideas?

Dairy-free Breakfast Ideas? need hints!

Need Breakfast Ideas -- Gfcfsf

Breakfast Ideas

[CarolinaKip]

This diet is hard, no question. When you get up in the morning, you have to ask yourself whether your food preference is more important, or the chance to test for sure whether celiac is the cause of your crushing fatigue.

I tend to eat fruit and some cheese or a Larabar or a Kind bar in the morning. Sometimes I eat peanut butter on gluten-free toast because it's fast and something I really like. On the weekend, I make an omelette and gluten-free toast or huevos rancheros with corn tortillas (Mission brand is made on dedicated lines).

Huevos rancheros sounds yummy, thanks for the idea! I am so thankful for this forum!

[Ahorsesoul]

Try cutting out the Chex. I find they make me tried after eating them. My dh has no problem with them.

[GFinDC]

Try cutting out the Chex. I find they make me tried after eating them. My dh has no problem with them.

Some of the Chex cereals have soy in them also. So that is another thing to consider eliminating. Soy that is.

[Aphreal]

Could you have chronic fatigue not responding to gluten-free?

Breakfast for me is the easiest to go gluten-free. I have Cagefree brown eggs, gluten-free bacon and or gluten-free waffles (buckwheat blueberry)

I pretty much eat the same thing every morn, Regular bacon tears me up but boarshead gluten-free bacon doesn't. I figure it's the smoke flavor in regular bacon? I don't know... all I care about is I found some I can eat. I love me some bacon!

[mushroom]

I haven't clicked on all the breakfast ideas others have offered. I will just give you mine (and my husband goes for it too).

I use yogurt but if you don't do dairy, do hemp or almond milk. I use some hemp protein powder and some ground flax seed for omega 3's. Add half a banana and whatever other fruit - strawberries are plentiful right now, but fresh or frozen blueberries (I have even added frozen mango slices) or whatever strikes your fancy. Throw two or three ice cubes in the blender and you have a delicious, healthful, satsfying breakfast that will see you through to lunchtime. I promise

[ClevelandGuy]

Could you have chronic fatigue not responding to gluten-free?

That's why I was wondering if 4 weeks was a good time to try a challenge, and see if I have any reaction to wheat. I was really expecting to see some change by now, and since the endoscopy was negative, I'm beginning to doubt Celiac.

There is no accepted diagnostic test for Chronic Fatigue, and anyway, in all my years of struggling with this (18+) I've pretty much covered the treatment options for CFS, and they didn't help.

[txplowgirl]

Just a suggestion.

My fatigue didn't start getting better until 2 months ago when I started reading about adenal fatigue. I started taking something at the healthfood store called Adrenal Factor. It's made a world of difference for me.