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Is Contamination Unlikely?

milkmommy

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milkmommy Apprentice
milkmommy
Posted

I've been gluten free for almost 3 months but am still sicker than ever. After previously posting on here, I got many responses saying I was probably being contaminated by gluten. This seemed very likely given my situation but I just found out my ttg levels have dropped to normal range. They are 14 and <20 is normal.

Can you have normal ttg with contamination???

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Skylark Collaborator
Skylark
Posted

I'm sorry you're still feeling sick. You are probably not getting CC if your TTG has dropped back to normal. What your Dr. probably didn't tell you is that a Marsh 3 biopsy typically takes a couple years to heal, and can take as long as five years if the damage is really bad. At three months with the TTG down, now your body can start to repair damage.

I also had to go casein-free/soy-free when I first got off gluten to be rid of the stomach trouble. I could only digest those foods after about a year gluten-free. You might try eliminating some of the common problem foods like dairy, soy, and corn to see if any of those are making you feel ill from non-celiac intolerances.

kareng Grand Master
kareng
Posted

I'm sorry you're still feeling sick. You are probably not getting CC if your TTG has dropped back to normal. What your Dr. probably didn't tell you is that a Marsh 3 biopsy typically takes a couple years to heal, and can take as long as five years if the damage is really bad. At three months with the TTG down, now your body can start to repair damage.

I also had to go casein-free/soy-free when I first got off gluten to be rid of the stomach trouble. I could only digest those foods after about a year gluten-free. You might try eliminating some of the common problem foods like dairy, soy, and corn to see if any of those are making you feel ill from non-celiac intolerances.

That's what I was going to say! :)

GlutenFreeManna Rising Star
GlutenFreeManna
Posted

I've been gluten free for almost 3 months but am still sicker than ever. After previously posting on here, I got many responses saying I was probably being contaminated by gluten. This seemed very likely given my situation but I just found out my ttg levels have dropped to normal range. They are 14 and <20 is normal.

Can you have normal ttg with contamination???

Normally I would agree with Skylark but I remmember your post about your husband not supporting your diet and completely disregarding your efforts to make a safe gluten-free area for you. Unless this situation has changed you can still be getting contaminated and getting sick from it. many people become more sensitive (symptom-wise) to small amounts of cc after they go gluten free. I'm of the opinion (based on my personal experience and reading on this board a lot) that you can test negative while still getting small amounts of gluten that make you sick as a dog. If this were not the case we would not have to tell people to load up on gluten prior to testing, there would not be as many false negatives and people that respond well to diet despite negative results. There are plenty of people that go gluten "lite" prior to testing instinctively and then they get a negative. Your negative result is a good sign that you are on the right track as far as eliminating MOST gluten but it does not mean that you have not been getting sick from CC. I also really think you should consider other intolerances, but only if you have gotten the gluten spreading husband to be more understanding.

milkmommy Apprentice
milkmommy
Posted
  • Author

Thanks for the fast replies!!

I've been trying to figure out if maybe there are other intolerances but have now gotten to the point were everytime I eat solid food I get nauseous, abdo pains. It doesn't seem to matter what it is, even plain white rice!!

I've only been having liquids today but still have symptoms plus a headache from hunger.

I called my gi yesterday who still hasn't got back to me. I doubt he will be much help considering he still maintains my biggest problem is ibs and that I need to eat fiber, (even though I already told him fiber/residue foods make me worse).

As for the contamination, I'm still in a highly glutened environment but have given up the battle and just make sure I wash my hands often and make my own food.

ravenwoodglass Mentor
ravenwoodglass
Posted

As for the contamination, I'm still in a highly glutened environment but have given up the battle and just make sure I wash my hands often and make my own food.

Have you gotten condiments, butter etc for just your own use and replaced the stuff you need to keep gluten free like your own dedicated toaster, strainers etc? There is quite a bit of stuff we shouldn't 'share' with gluten eaters.

dilettantesteph Collaborator
dilettantesteph
Posted

Have you thought about setting up your own mini kitchen? You could get a dorm fridge, microwave and hotplate and put it somewhere there is a sink. Then keep out of the kitchen. At the least it would give your husband the message that at least you are taking this seriously. If it works, he might be more supportive.

My husband was more supportive once my health improved so he knew that gluten really had been the problem.

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ravenwoodglass Mentor
ravenwoodglass
Posted

My husband was more supportive once my health improved so he knew that gluten really had been the problem.

That was the case with my family also.

T.H. Community Regular
T.H.
Posted

That sounds somewhat similar to my daughter. A few months ago, everything she put into her stomach hurt, no matter what, even if it was a glass of water! I saw what she had to go through, where she was hungry but it always hurt so much she didn't want to eat - so much sympathy for you, hon!

Here's what they tested her for, in case it helps, and what seems to be her biggest issues. She has been improving, but it's still not 100%.

- H. pylori infection of the gut

- Crohn's disease. This is hard to diagnose. There's no cure. It needs dietary changes and sometimes steroids (diet is different for each sufferer, so it needs the help to see what's working).

- Food allergies - not a prick test, though. That doesn't do much. We did food journal, with my daughter (the allergist will be looking at blood testing potentially later).

- environmental allergies - prick test fine for these.

My daughter turned out to have some nasty environmental allergies that were being inhaled, getting down her throat and into her stomach, and were inflaming her stomach and intestines a lot. That was making everything go through it hurt. She has a few food allergies too that we have to avoid to avoid the pain.

She is also pretty darn sensitive to gluten. When she's gotten glutened, for 4-7 days following, she's so inflamed inside she reacts to everything going through her gut with pain.

When we reduced her exposure to her allergens and got very strict with the gluten-free issues, her stomach pain has almost completely disappeared. Getting more gluten cc makes the pain come back, getting more of her allergens makes any cc pain last longer and be more intense, best we can tell.

We're still concerned there might be something else, because she has a couple abnormal lab tests, but we're waiting to visit with specialists, still on it.

don't know if any of this is for you, but I hope that some of it might be able to help. :-)

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