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On Gluten Free Diet... Nothing Changed!

nutbutters

By nutbutters
in Coping with Celiac Disease

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nutbutters Rookie
nutbutters
Posted

I went on a gluten free diet on the basis of an intestinal permeability test, which proved I was suffering from terrible malabsorption. I am still on this diet and have been for almost two months now; the school has even given me a personal chef, and I am feeling ill. I'm sure her food is safe, and I know she is cooking it right, and with dedicated pots and pans. I've suspected from the beginning that celiac was not my issue, because the test was not very conclusive. Anything I eat, not just gluteny foods, make me sick. What should I do?

Thanks!

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ravenwoodglass Mentor
ravenwoodglass
Posted

You say your celiac test was not conclusive, does that mean it was a low positive? Even a low postive is a positive. Have you eliminated dairy? That is often required in the beginning. Have you checked your personal care items? Things like shampoos, lotions, makeup etc can all be a problem. Are you still consuming gluten grain alcohol? If so stop until you are feeling better. Do you do art or craft projects? Many of the materials used for those are not safe, you need to check them. It can take a while to heal and also to ferret out all the sneaky sources of gluten. Do also make sure that the person cooking your food is really up on the issue of CC. Many who don't deal with this diet themselves don't understand the danger of foods processed on shared lines. I hope you are feeling better soon.

mftnchn Explorer
mftnchn
Posted

I agree with this post. Did you have any other testing but the intestinal permeability?

Have you seen any changes at all, even worsening of something?

Are you taking digestive enzymes? The damage you have may be impacting your ability to make enzymes. I take two prescription dose pancreatic enzymes with every meal and it helps a lot.

When you feel "sick" what symptoms do you have? If it is nausea, you might seek a test for h. pylori. Celiacs have this more readily than others. It causes gastritis, ulcers, nausea, etc.

Other ideas might be that you need a very simple to digest diet for awhile. I also had severe malabsorption before I went gluten-free. I also went casein free for ten months, and after 3 months went soy free. I did improve some but also became worse in some ways and started cycling up and down. After 10 months, testing still showed profound deficiencies. I started supplementing a lot; I still kept cycling up and down. Finally testing showed that I am not able to digest carbs. Initially I tried carb digest enzymes. Got a little better but testing was still way abnormal. My doctor put me on the Specific Carbohydrate diet in mid July. I am responding very very well to this.

Malabsorption can also be caused by other things than celiac, but I think this is a good possibility.

ShayFL Enthusiast
ShayFL
Posted

Many of us discover that GLUTEN is not our only problem.

Would try eliminating dairy for awhile and soy. Those can be very bothersome in the healing process.

nutbutters Rookie
nutbutters
Posted
  • Author
Many of us discover that GLUTEN is not our only problem.

Would try eliminating dairy for awhile and soy. Those can be very bothersome in the healing process.

I do avoid soy and dairy per my doctor's suggestion! I have been gluten-free, dairy-free, soy-free for the same amount of time. Yes, I only had an intestinal permeability test run on me (nothing else), and my symptoms are seizure-like spasms, joint pain, terrible indigestion (no matter what I eat), headaches, nausea. The intestinal permeability test was the "most abnormal" my doctor had ever seen one and therefore immediately put me on a gluten-free, dairy-free, soy-free diet and diagnosed me with celiac disease on the basis of that test.

I'm sure the woman cooking for me is very well-trained when it comes to celiac (it's what she does); I was the same way at home, when I was preparing my food, as I am now.

To be a little more specific, my stools are always well-formed and not really an issue.

Nothing has gotten worse, nothing has gotten better. I remain as symptomatic as I was before.

mftnchn Explorer
mftnchn
Posted

That's an unusual way to diagnose celiac. With no change after 2 months either good or bad I'd want to start exploring other reasons for the malabsorption.

The other thought might be that you will have to much more restricted initially. Check out SCD perhaps. Try the book Breaking the Vicious Cycle and see if that fits you.

Here's one idea: Open Original Shared Link. This is an example of an infection that can really mess up the intestine.

Hope you get some relief soon.

kbtoyssni Contributor
kbtoyssni
Posted
Anything I eat, not just gluteny foods, make me sick.

Also, are you still eating gluten foods occasionally? If so you may not be feeling better since eating gluten on occasion will not allow the intestines to heal. I would also explore other reasons for the malabsorption. Celiac isn't the only potential cause, and there should have been another reason (blood test, always sick after eating bread, etc) for assuming it's celiac.

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CarlaB Enthusiast
CarlaB
Posted

I would check out bacterial dysbiosis and intestinal parasites.

My parasite test came out negative, yet when I took some herbs I saw tapeworms and roundworms (very large).

I had a lot of stomach pain after eating any food. I also had constant diarrhea. I do not have celiac disease and am no longer gluten intolerant.

utahlaura Apprentice
utahlaura
Posted
I went on a gluten free diet on the basis of an intestinal permeability test, which proved I was suffering from terrible malabsorption. I am still on this diet and have been for almost two months now; the school has even given me a personal chef, and I am feeling ill. I'm sure her food is safe, and I know she is cooking it right, and with dedicated pots and pans. I've suspected from the beginning that celiac was not my issue, because the test was not very conclusive. Anything I eat, not just gluteny foods, make me sick. What should I do?

Thanks!

I had two IGA tests that came out normal, but then my endoscopy biopsy tissue test for villi damage showed quite a bit of "stubbing" and confirmed Celiac. My gastroenterologist ( which I chose for his expertise on this) said that there is such a thing as non- antibody Celiacs. That's why my reaction symptoms are mostly neurological instead of the stomach ache, nausia, vomiting, headache that results from antibody producton..as though one suddenly has a bad flu. Joint pain, disorientation, loss of balance, and ringing in the head are my main pains in the butt.

But I still have the same problem as you..I seem to be actually getting worse during this healing process sometimes. I'm able to eat fewer and fewer things every day. Was fine with rice, olive oil, fish and dairy before. Now, no go. But my reactions aren't as serious. That's the only improvement.

My dietician told me that every Celiac has their "nemisis foods" that they will react to that are gluten free, and that these will change around continually during the initial "healing process" and to expect a lot of confusion, frustration, and unexpected reactions. Sometimes just because of a stressful day, you can get reactions out of thin air without even eating. basically expect a lot of "hell" for a while and more weight loss till things eventually start to turn around. When this will happen is anyones guess. That's most of the frustration..not knowing anything for sure or what to expect for sure at first. You don't have anyone to go to..anyone to advise you on what you are doing right or wrong. It's all so confusing and we are really actually on our own. Bummer, huh? Good luck to us all!

Nancym Enthusiast
Nancym
Posted

A good elimination diet might help you find other foods you react to. I figured out nuts, seeds and chocolate really mess me up. But again, they tend to display as intestinal woes.

Oh, it took me a good six months to feel my joints improve after going gluten-free/DF. You might want to give it more time. My intestinal symptoms cleared up pretty quickly.

mftnchn Explorer
mftnchn
Posted

One more comment, I remember a poster on the forum who said she had to puree her food for about 6 months. The intestine can be in pretty bad shape.

MyMississippi Enthusiast
MyMississippi
Posted

Could be that your gut is going to take a long time to heal----

I would change my diet to include only a few foods at a time and keep a food journal--- then you might be able to track the foods that bother you.

Case in point------ it took me a long time to figure out that "healthy" ;) ground up flax seeds added to my breads gave me a belly ache---

mftnchn Explorer
mftnchn
Posted

More good suggestions!

I second Carla's ideas...parasites have clearly been part of my problem too. I've passed a lot too. Feel free to PM if you want more info about what I think helped get rid of them.

One other thought I had, would your chef be willing to make a list of the brands/names of products he/she is using for you? If so, you can post here. Some of the more sensitive celiacs have been able to pick up the products that claim gluten-free but really are not. It might be that you just need to switch to a more reliable brand as the labeling currently is problematic.

nutbutters Rookie
nutbutters
Posted
  • Author

Thanks for all your suggestions!! I'm scheduling an appointment with a gastroenterologist in the area for next week, so that I can have the intestinal permeability test run as well as several other tests for parasites and more conclusive tests for celiac. All of my gastrointestinal symptoms are pretty recent developments; they only started within the last 8 or so months. I have forever had all of the other symptoms; it wasn't until I was medicated that my gastrointestinal symptoms presented. I'm very worried about this and as such, I see much need for a few more doctor's visits.

I can check with the cook to see if her products are safe. I haven't dared touch gluten free breads or bagels, instead opting to just eat food I know I can eat.

Thank you all!!!

HOWBOUTPURPLE Newbie
HOWBOUTPURPLE
Posted
I went on a gluten free diet on the basis of an intestinal permeability test, which proved I was suffering from terrible malabsorption. I am still on this diet and have been for almost two months now; the school has even given me a personal chef, and I am feeling ill. I'm sure her food is safe, and I know she is cooking it right, and with dedicated pots and pans. I've suspected from the beginning that celiac was not my issue, because the test was not very conclusive. Anything I eat, not just gluteny foods, make me sick. What should I do?

Thanks!

You should have your Dr. check for H-Pylori. I have both going on at the same time...its hell. All foods hurt me.

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Lots of good advice above!

I just wanted to chime in and tell you that although Rice Dream brand rice milk says "gluten-free " on the box, IT ISN'T. :ph34r: They use barley enzymes in the processing, and they are allowed to call it gluten-free because the amount of gluten is less than 200 parts per million--but that is still enough to cause a reaction in many celiacs.

Are you also avoiding oats? That is also a problem for many, perhaps most celiacs, unless certified gluten-free (grown on wheat-free fields, processed in wheat-free facilities, which is NOT true for the major brand names).

Gluten also hides in many surprising places, like deli-made tuna salad (contains bread crumbs), and "lite" products. Also, some nutritionists are STILL unaware that soy sauce and malt are gluten. I don't suppose it's possible your chef was trained by one of those?

Also, don't lick envelopes! (the glue contains gluten)

neesee Apprentice
neesee
Posted

Open Original Shared Link

According to this statement, envelope glue doesn't contain gluten.

neesee

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted
Open Original Shared Link

According to this statement, envelope glue doesn't contain gluten.

neesee

I'm so glad you posted this--last I'd heard, it was wheat-based! Good to know.

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