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veryami1

Frustrated /possible Other Sensitivities

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So I've been gluten free for over three months now.You would think it would be getting easier, with fewer glutening incidences, but not the case for me. Short of locking myself in the house and never eating out, is there any option? I'm thinking I haven't been as strict as I need to be, because I am getting sick once a week, if not more. When I do eat out, I tend to stick to places where I've eaten and not gotten sick before.  but maybe that's too much of a risk for a newly diagnosed Celiac? 

 

But now I seem to be getting sick from something else. I can tell because I haven't eaten out all week, and tonight, for example, I had cramps and D.  I've heard some things about corn sensitivity, and I had popcorn, so I'm thinking maybe that's it. However, I've had corn and popcorn previously with no reaction. So what's the deal there?  

 

I think I need to eat entirely clean for awhile and do the whole elimination diet. Any recommendations of what to eat thats entirely safe, no possible sensitivity? Rice, bananas, chicken? If I do this, I must need a multi-vitamin, no?

 

I'm just sooo frustrated and while I would never hurt myself, I seriously cannot imagine living like this for the rest of my life. I sometimes just want to lock myself in my bedroom and never leave.  

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Many here will suggest you not eat out at all for the first 6 months or so to give you body a real chance at healing before trying to rock the boat.  If you have been dx with Celiac then there should be a need beyond that than eating gluten-free. Some do find more relief from also removing dairy but I would give a truly gluten-free (i.e. not eating out) a real chance before pulling other foods.

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It won't be like this for the rest of your life.  You are healing still.  You are learning about what you can and can't eat still.  It will get better as you figure things out.  It is really hard at the beginning to tell what is making you sick.  It might be better to eat pretty simply and not eat out for awhile to simply matters.  It has only been a little over three months.  I know that seems like a long time to you, but it isn't to me.  I have heard the estimate of one month healing for each month sick.  I don't know the source of that, but it doesn't seem unreasonable to me.  In my opinion, it is too soon to look for other causes. 

 

For entirely safe, have a look at the trace gluten contamination elimination diet in his study: http://www.biomedcentral.com/1471-230X/13/40

click on the Table 1 link to get a list of allowed and not allowed foods.

You may decide on a less strict version.

 

I hope you feel better soon.

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Hi Ami,

I've had this issue too and it is really frustrating. Someone on here suggested a food diary. By doing that and writing down everything I ate plus whenever I had D...gross I know...I was able to figure out some stuff that bothers me whenever I eat it. I was desperate when I started it because it felt like I was always getting D. So I started off with only chicken, rice, potatoes, sweet potatoes, bananas, strawberries and blueberries. Did just that for a week...really boring...but no D. Then I added one thing at a time...steamed carrots, steamed asparagus...etc. For me I found that high fat or high sugar sets my system off. Not sure if it's because of celiac or lack of a gallbladder. I had the gallbladder out 2 weeks after celiac diagnosis and will probably never know.

I hope this helps you and that you feel better!

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I had problems with high fat too.  Then I learned about exocrine pancreatic insufficiency. 

https://www.celiac.com/gluten-free/topic/105648-exocrine-pancreatic-insufficiency/?hl=%2Bexocrine+%2Bpancreatic+%2Binsufficiency

Pancreatic digestive enzymes fixed that.  I seem to only need them for a few weeks when I have been glutened.

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Hi dillentantesteph, that's helpful. I too seem to be encountering new gastro problems too, not D neither C but since having been glutened (wheat in chocolate, why do they do that?) my problems with dairy has come back, I feel like I have trapped wind (left side pain, by groin). My nutritionalist thinks I need to take some probiotics as I have had to take three rounds of antibiotics in the last 18 months.  So I am wondering if these enzymes might help, too.  I didn't realise you could take them as and when you need them.  Can you just get them over the counter or is it something the doctor has to prescribe?

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Congratulations on hitting the three month mark.

But that is still pretty early in the process so don't beat yourself up too badly. You're still in the phase where you are learning lessons from mistakes. And though it may seem as if you're never going to make it a full month without getting glutened, you will get better at it. 

Eating out is always going to be a high-risk prospect, so you may want to skip it, at least temporarily.

But once your body starts to function properly again, it is really common for people to notice other food intolerances they didn't notice before. Some might just be temporary, others just a matter of eating more balanced meals, so don't panic that there won't be anything left for you to eat.

A food/symptom diary is the easiest way to figure out additional intolerances or potential sources of hidden gluten. And don't forget to include spices and seasonings in what you log because not all of them are gluten free.

Becoming familiar with some of the common food intolerances helps identify patterns too. In addition to lactose, fructose, allium, nightshades, fat, etc., don't forget about artificial colors that are known for causing reactions and intestinal damage. 

Speaking of chemicals, you may also want to become familiar with the foods that are most important to buy organic because residues of toxic pesticides, herbicides, fungicides, and insecticides can also cause stomach upset. If you don't have a corn intolerance, make sure that you're making your popcorn from scratch and not microwavable where chemicals from the bag or the flavoring can be a problem.

I have a real life friend who is also gluten free and we both agree that we didn't get good at it until about the nine-month mark. Nowadays, I barely even think about it, even when grocery shopping. I simply have new favorite foods and a much higher percentage of my shopping is done in the produce section so that I can cook from scratch.

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Hi dillentantesteph, that's helpful. I too seem to be encountering new gastro problems too, not D neither C but since having been glutened (wheat in chocolate, why do they do that?) my problems with dairy has come back, I feel like I have trapped wind (left side pain, by groin). My nutritionalist thinks I need to take some probiotics as I have had to take three rounds of antibiotics in the last 18 months.  So I am wondering if these enzymes might help, too.  I didn't realise you could take them as and when you need them.  Can you just get them over the counter or is it something the doctor has to prescribe?

 

Enzymes for EPI digest fat, protein and carbohydrates.  There are over the counter digestive enzymes too, but they aren't regulated as well as prescription enzymes.  Problems with dairy are more likely due to lactose intolerance.  Lactase is produced in the tips of the villi.  There are lactase supplements available too, or you can find lactase in enzymes formulations.  I haven't tried any.  I just decrease my dairy consumption until I recover.

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