I Don't Know What To Do Now

[KarenFe]

I've had various degrees of diarrhea for a year now and can not get it under control. My blood work results were:

TG ABIGG........

IgG and IgA, normal is 10 (high) and better would be 7. Mine was 38.

Again IgG and IgA - active. Normal is below 5 and mine was 92.

I had an endoscopy in April and all was normal. I had a colonoscopy in June and all was normal.

I have been trying to be gluten-free since after my endoscopy in April. I say "trying" because I haven't been able to get my body regulated. When I accidentally might have had some gluten (ie - having a milkshake but realizing the same mixer just mixed my kid's malt shakes) I notice 3 days later I'm at my worse.

I think I am seeing a pattern if I accidentally have gluten. It appears that the 3rd day after I am at my worse, but the build up to this worse day and then the going back down takes roughly a week. Is this possible?

I just talked to my doctor and he said the consequences of having gluten would be immediate. Sometimes I question what he says because I have read celiacs and gluten sensitivity are quite common yet he tells me it's very rare.

I also wonder why I have not been able to regulate myself. Some days are close, but I can't seem to keep it that way. I'm fairly certain I am not getting gluten without knowing on a daily basis. I do know accidentally having it is more of a possibility (another way in that my dd made corn muffins but used a corn meal I had in my shelf from before going gluten-free and we are not sure if it was a gluten-free product).

I guess I ned to know what can the results of having gluten be. Does it set in right away or can the worse be 3 days later and last a week?

Thanks to anyone who read all of this and can offer some help and guidance. I feel like I will forever be struggling with diarrhea and definitely don't want to be on any medication for it. I don't even like taking tylenol if I don't absolutely have to.

That reminds me, having been gluten-free as much as possible these last few months, my headaches have practically gone completely away. I didn't notice this until my family mentioned it.

Thanks!

Karen

[Jason-h75]

Karen,

What your explaining sounds a lot like my symptoms before I found out I was celiac. I

[ravenwoodglass]

Your 3 days later for the worst (for me that means the D part of my reaction) is spot on. I was diagnosed with the aid of a physican formulated elimination diet. He had me add foods in for week because the gluten reaction can take that long to rear it's ugly head. For me I have my neuro symptoms return within a day but the gut reaction takes the same time as you, 3 days and then the rest of my symptoms, joint and muscle pain and severe tiredness and brain fog, remain for another 3 weeks.

An allergic reaction would appear quickly but an intolerance reaction takes longer. Your doctor seems to be as clueless as most as far as celiac is concerned. You have come to a great place for support and information, one of the best on the net IMHO. One thing that will help you heal the fastest is to avoid processed foods as much as you can and if you are not already do become familiar with crosscontamination issues (CC). Post any questions you need to and I hope you are feeling better soon.

[jststric]

By the time I got mine under control, I had eliminated not only glutens, but dairy, eggs, nuts, rice and beans!! It's a trial and error thing. You simply need to give yourself several days of eliminating one more thing and see how your system feels. I don't react to things for at least 1 1/2 days and sometimes longer. I've read many times in this forum that it can be in our systems as long as 15 days and that we can react anywhere in that time-frame!! That makes writing things down nearly necessary because who can remember what we ate 15 days ago??? Not me! Also, are you reading EVERY SINGLE ingredient label??? You would be surprised where you will find wheat (and for me dairy also!) Pasta sauce---who woulda thought? hot dogs----what the heck? Potato chips are often good, but many of them---such as Pringles---uses wheat in them! Cross contamination is ALWAYS our foe also!! Consider the brand/company making said item.....do they make other things....other flavors?? Do their product packaging say "processed in a facility that also processes.........and then names items you cannot have?? Its simply a learning experience!! And keep reading those labels because often a company will change their facility or change their recipe and what once was good for you to have, suddenly may not be. Yes, it's a pain. Best wishes!!

[KarenFe]

Thank you for your advice. I really, really appreciate hearing from everyone. I'm so tired all the time and this "bathroom" issue is always on the forefront, so I hope to get all of this under wraps soon. It sure is taking it's own sweet time. I have been pretty diligent looking at labels and cook at home (from scratch) anyway, but know some things are bound to slip by me. I will increase my watch for anything suspect. I have found that carrogenan bothers me, which is too bad because I read somewhere that Ben & Jerry's ice cream was gluten-free unless obviously not if it contains something like brownies.

I think I'm fairly careful about cross-contamination. I got rid of our toaster. I do let the kids have bread and pizza sometimes and clean up all crumbs on the counter. CC is a tough one, isn't it. I guess it depends on how sensitive I really am. Hopefully I can get my body under control to test one day soon.

Two to 4 weeks casein free? That seems really hard to do. That would include icecream, yogurt, milk, butter, and anything with "milk" listed on the label?

Yes, 3 days being the worse is the "D" part. I really wish I could rely on my doctor, but I seem to be fitting into the gluten sensitive mold quite well. I would *love* to not be so tired anymore too. Yesterday (3 days after possibly eating gluten) I took 3 naps! Two of which were over an hour each. That just doesn't work being a mother and homeschool mom to 3. I don't want my kids to remember me one day as always being tired and crabby.

Thank you everyone! Your replies are so helpful.

Karen

[lovegrov]

Just based on comments over the years, I'd say that the "immediate" reaction is much rarer than a delayed reaction. Mine is probably about a day after.

richard

[mommida]

Your doctor is wrong. There are "silent Celiacs" who are not suffering from severe G.I. symptoms. They usually are diagnosed because of anemia, not G.I. symptoms. They do have damage to the villi visible during an endoscopy with biopsy.

[Roda]

Your doctor is wrong. There are "silent Celiacs" who are not suffering from severe G.I. symptoms. They usually are diagnosed because of anemia, not G.I. symptoms. They do have damage to the villi visible during an endoscopy with biopsy.

Yep I was one of those. My kids pediatrician even refused to order the tests for my kids after I was diagnosed because they appeared healthy and were not extremely underweight. Duh!!! I was slightly overweight at the time of my diagnosis and very few gi complaints. I did have heartburn that was new and constipation off and on all my life but I did not relate it. The heartburn was the first thing that went away gluten free and the constipation is better. Now when I accidently get cc or something I usually present (depending on how much I got) within 30 min to several hours with the heartburn. I've never had D, but several days after a cc I am battling constipation.