Help! Symptoms Not Disappearing!

[michayla]

I do not know what is going on, but I feel like something is WRONG. I was recently diagnosed with celiac (positive blood test but negative endoscopy - doctor was still convinced i had it based on my symptoms and blood work) and have been gluten free for a little over a month. i have been very, very careful, and just in case i have avoided situations with even POTENTIAL cross contamination/gluten ingredients.

initially, some symptoms such as pain and bloating after eating went away, but others, such as D, still remained. i know my body needs time to adjust, so i was not surprised that everything didn't go away initially.

however, now some of the symptoms have not only started to creep back, but actually get WORSE. my D is as if i have taken excessive laxatives - and it is like that daily. i now have terrible, terrible pain and bloating after i eat, and sometimes it even creeps up into my chest and causes AWFUL chest pain. nothing has changed in my diet in terms of the types/brands of foods i eat, and i have been (still) super careful.

is it possible, do you all think, that maybe i don't have celiac after all and something else is going on? i have an appointment with my doc tomorrow, but i am curious to hear your experiences. i don't understand why things were improving at first, but now it's really awful to the point where i am so uncomfortable with pain and bloating and now have terrible gas. i have been bound to my house at times as a result.

gluten free was supposed to help me!! what's going on????

[lucia]

Ask your doctor about bacterial overgrowth and colitis. The same thing happened to me, so I did some research as to what it could be.

The story ends happily. I started treating myself for bacterial overgrowth with a specific carbohydrate diet, and I'm getting better. I have a "breath test" tomorrow which may confirm my self-diagnosis. We'll see. In any case, it worked!

[ravenwoodglass]

What are you eating? You should be going with whole unprocessed foods while you are healing. Also some companies will have labels that have ingredients that are gluten free but not disclose CC issues in the plant or on the lines. You may have gotten CC'd somewhere, do you have your own new dedicated toaster? Are you cooking with flour for others? Are you in a house with gluten eaters and sharing condiments, butter, nut butters etc? Have you checked all meds with the makers, this includes OTC and script and also supplements can say gluten free but still have wheat and barley grass which are not safe for us.

Many of us find we react more strongly to cross contamination as we heal and this may be happening with you. When we get glutened after going gluten free it is not unusual for the symptoms to be more severe than they were before we went gluten free. You are early in on the diet and it takes some time to ferret out what is safe for us and what isn't and for our bodies to heal fully.

[michayla]

What are you eating? You should be going with whole unprocessed foods while you are healing. Also some companies will have labels that have ingredients that are gluten free but not disclose CC issues in the plant or on the lines. You may have gotten CC'd somewhere, do you have your own new dedicated toaster? Are you cooking with flour for others? Are you in a house with gluten eaters and sharing condiments, butter, nut butters etc? Have you checked all meds with the makers, this includes OTC and script and also supplements can say gluten free but still have wheat and barley grass which are not safe for us.

Many of us find we react more strongly to cross contamination as we heal and this may be happening with you. When we get glutened after going gluten free it is not unusual for the symptoms to be more severe than they were before we went gluten free. You are early in on the diet and it takes some time to ferret out what is safe for us and what isn't and for our bodies to heal fully.

i am very careful with gluten free foods and cross contamination. i do live with some who isn't gluten-free, but we don't mix toaster/butters/spreads/jellies/etc. i also check ALL labels, so even if it is processed in a plant making other wheat products i do not eat it. i am not sure my case is a very severe case of celiac since compared to others' symptoms, mine are very mild (only digestive issues/extreme lack of energy). but either way, i eat a lot of rice cakes, peanut butter, gluten-free oatmeal, fruits, rice chex, almond milk, and specific gluten free bread/granola bars, etc. i have checked all my meds with the companies to make sure they are gluten-free and won't take anything if there is a chance it might not be. while i do not think i am super sensitive as others are, i am nonetheless behaving as if i were just in case.

i will ask about bacterial overgrowth and colitis today, however. i never thought about that!

thank you guys!

[ravenwoodglass]

i am very careful with gluten free foods and cross contamination. i do live with some who isn't gluten-free, but we don't mix toaster/butters/spreads/jellies/etc. i also check ALL labels, so even if it is processed in a plant making other wheat products i do not eat it. i am not sure my case is a very severe case of celiac since compared to others' symptoms, mine are very mild (only digestive issues/extreme lack of energy). but either way, i eat a lot of rice cakes, peanut butter, gluten-free oatmeal, fruits, rice chex, almond milk, and specific gluten free bread/granola bars, etc. i have checked all my meds with the companies to make sure they are gluten-free and won't take anything if there is a chance it might not be. while i do not think i am super sensitive as others are, i am nonetheless behaving as if i were just in case.

i will ask about bacterial overgrowth and colitis today, however. i never thought about that!

thank you guys!

Drop the gluten free oatmeal. That should IMHO only be consumed by those who are well healed. Many of us do react to oatmeal. You are also consuming quite a bit of processed foods it is better to go with whole naturally gluten free food for a while. Also some rice cakes are not gluten free what brand are you using? It is also advised to limit the amount of specialty gluten free products for a bit while healing. Many have ingredients that we may have issues with like soy or bean flour for example.

[dilettantesteph]

I agree with Ravenwoodglass. Cut out the oatmeal. When you have healed you can try it again to see if you can tolerate it. It gives me symptoms just like my reaction to gluten. Also the rice cakes until you have healed. Have cooked rice instead. Eat whole, unprocessed foods until you are feeling better and then you can try those packaged items again. You didn't say whether or not you are eating dairy, or at least I didn't notice. Lots of us are lactose intolerant until we heal, so you should cut out the dairy too. What brand almond milk are you using? More sensitive celiacs react to some of them. I hope that helps.

[michayla]

I agree with Ravenwoodglass. Cut out the oatmeal. When you have healed you can try it again to see if you can tolerate it. It gives me symptoms just like my reaction to gluten. Also the rice cakes until you have healed. Have cooked rice instead. Eat whole, unprocessed foods until you are feeling better and then you can try those packaged items again. You didn't say whether or not you are eating dairy, or at least I didn't notice. Lots of us are lactose intolerant until we heal, so you should cut out the dairy too. What brand almond milk are you using? More sensitive celiacs react to some of them. I hope that helps.

for rice cakes i eat quaker, or mother's brand, both which explicitly state are gluten free. and i eat the bob's mill gluten free oatmeal, so why would i react if oats themselves are gluten free and it is merely the process by which they are milled that causes problems? it says on the packaging that they use separate lines and such, so i figured that was ok.

i use almond breeze unsweetened vanilla almond milk, and it also says it is gluten free on the packaging. any yogurts/cottage cheese, etc. are only consumed if again, explicitly labeled as gluten free. my fat free half and half is also gluten free (i called the company).

i have no other allergies and have never had issues with dairy in the past.

i guess i do tend to eat a lot of processed foods but i don't do it on purpose! i'm on a very strict budget, and they are honestly cheaper than fruits/veggies and they last much longer.

they are going to be testing me now for crohn's and colitis, so hopefully i'll get more answers. thank you for all of yours!

[ravenwoodglass]

for rice cakes i eat quaker, or mother's brand, both which explicitly state are gluten free. and i eat the bob's mill gluten free oatmeal, so why would i react if oats themselves are gluten free and it is merely the process by which they are milled that causes problems? it says on the packaging that they use separate lines and such, so i figured that was ok.

i use almond breeze unsweetened vanilla almond milk, and it also says it is gluten free on the packaging. any yogurts/cottage cheese, etc. are only consumed if again, explicitly labeled as gluten free. my fat free half and half is also gluten free (i called the company).

i have no other allergies and have never had issues with dairy in the past.

i guess i do tend to eat a lot of processed foods but i don't do it on purpose! i'm on a very strict budget, and they are honestly cheaper than fruits/veggies and they last much longer.

they are going to be testing me now for crohn's and colitis, so hopefully i'll get more answers. thank you for all of yours!

You want to quit the oats because not all celiacs tolerate them and you may be one of the many that don't. I wouldn't touch Quaker rice cakes with someone else's hand. IMHO the chance of CC with those is great.

I know it seems hard to eat whole foods but once you get used to it and the cooking yourself it can be a great deal cheaper than buying prepared foods.

[txplowgirl]

I also agree with the quaker rice cakes and gluten free oatmeal. I am one of those people we call super sensitive. I cannot eat hardly anything that is made gluten free or made on shared lnes, etc. I have reactions to them, expecially the gluten free chex cereals.

I have to eat just plain meats, fruits and veggies. If you notice my signature. I am also dairy, nightshade and soy free too. It's harder, but once I cut out those I started getting a lot better.

[lucia]

i am not sure my case is a very severe case of celiac since compared to others' symptoms, mine are very mild (only digestive issues/extreme lack of energy).

Hi Michayla,

Just a note to say that the severity of your symptoms doesn't indicate the amount of damage to your intestines from celiac. Some people have no symptoms, but will have much damage from celiac when their intestinal wall is viewed through an endoscope.

Lucia

[michayla]

Hi Michayla,

Just a note to say that the severity of your symptoms doesn't indicate the amount of damage to your intestines from celiac. Some people have no symptoms, but will have much damage from celiac when their intestinal wall is viewed through an endoscope.

Lucia

yes, i suppose you are right. i only assumed i was not as severe of a case not only because of my symptoms but also because my endoscopy came back completely 100% normal, so if there were damage, it was not nearly as severe.

and i don't know if this matters - but i looked into what you guys said about the rice cakes, and called the company. i specifically discussed the issue of CC with them and they told me that they were not legally able to declare a food "gluten free" without some sort of allergy warning if it were used on the same lines as other gluten containing products. i don't know if this changes anything for any of you..

but regardless - i still nonetheless appreciate any and all advice/tips/suggestions - anything you guys can provide. i am still learning a lot about this and need as much help as i can get!

thank you!!!

[ravenwoodglass]

yes, i suppose you are right. i only assumed i was not as severe of a case not only because of my symptoms but also because my endoscopy came back completely 100% normal, so if there were damage, it was not nearly as severe.

thank you!!!

There are false negatives on both the blood and biopsy. With the biopsy you have over 22 ft of small intestine and the damage can be spotty and be in an area the scope can't reach or an uneffected area can be biopsied. Also some doctors don't recognize the changes that precede total villi destruction and will report to the patient that the results were negative when in reality they weren't. If you get an actual hard copy of your results and post them here some folks are quite knowledgeable and can help interpret them.

The fact that your symptoms resoved at first and then started to come back with a vengance are a clue that you have gluten sneaking in somewhere or that you are one of us who does not tolerate oats (since you stated you were eating them regularly).

[rdunbar]

Hi, I just wanted to add that it's really important to remain patient with the healing process, I know, I've gotten totally frustated with not getting better endless times; and the feedback you get from your body as to how the healing is progressing can be really confusing, sometimes you feel better for a while, then you don't. I geuss there are so many ways your system has to rebalance and readjust that there's a certain topsy turvyness to it.I think I'm on the more sensitive side, I got so sick of not getting better, that 6 months ago I cut out all processed/ packaged foods, eating out ( except 2 trips to pf changs where I ordered steamed chicken and bok choy with no sauce), just eating meat, vegetables, and fruit; so it can be done. I was really careless before, getting cc'd frequently, and doing dairy, which turned out to be a major stumbling block. I'm doing much better, my GI symptoms, and D are mostly gone, and my mood and anxiety problems are less frequent and less intense than in the past. Also, joint achiness and pain, and the tingling and numbness in my arm and hand is like 90 percent better, but not gone altogether. It's definatly a lot of work, and it does limit you in umpteen ways, but it's also really satisfying and rewarding, too. Sometimes when I go to The Berkeley Bowl, which is this gargantuan grocery store where the produce dept is as big as a normal grocery store, I almost feel like I'm getting away with something, like I've found a way to get around consuming all this other crap. I'm really happy now if they can just dig it out of the ground and I can buy it, and there's no steps in between where I don't know what's going on.