Please Help A Newly Diagnosed Teen With Pain.

[Mrs. L]

My daughter is a newly diagnosed teen.

She had a very high indicating blood test followed with a positive endoscopy biopsy.

The Gi specialist says her case is severe. Her small intestine villi are atrophied. Hope I am explaining that correctly.

We have been completely gluten-free and Dairy Free including toiletries, meds, vitamins, toothpaste, etc. for 3 weeks.

She has had acute pain under the rib cage for one and a half months. This all began with a severe case of strep but she has had many gluten bouts in that past, we just did not know that was what they were until now.

Multiple blood tests and ultrasounds as well as endoscopy rule out other organ problems such as kidney or other abdominal problems and the GI doc says her damage is enough to cause her this continuing acute pain until she heals.

She has missed so much school and is starting to get so down and worried that she will always be in pain.

After 3 weeks gluten-free and DF shouldn't she be beginning to heal enough to be out of acute pain?

I have heard it takes 1-2 months to heal but does that mean one day she will just wake up pain free?

She needs hope, appreciate any insight. Thank you!

[RunningPickle]

First, let me say that I sympathize with your daughter immensely.

I was 17 when I was first diagnosed. I had extreme pain under my rib cage on the left side to the point I curled up in the fetal position and just sobbed. I started getting better relatively quickly. And while my case was considered relatively severe at the time (though it sounds like your daughter may be quite worse), I began recovering quite quickly. It took awhile for my stomach pain to go away, but it did get better as the weeks went on. I'd spent most of my life with some kind of stomach ache, so as long as it wasn't debilitating, I accepted the pain. Growing up I had no idea that it wasn't normal to have a stomach ache after every meal...I just thought that's the way it was. My diagnosis originally started with the flu (although it may have actually been strep now that I think back...for some reason I'm very prone to strep). I don't remember when I started feeling 100% better or how long it took, partially because there was quite a bit of trial and error in learning that eating gluten free meant eating absolutely, positively NO GLUTEN. I'd cheat here and there thinking I'd be ok, only to find myself reeling from a stomach ache later. It took a good few months for me to figure things out as a stubborn teenager.

So I don't know that I've helped at all, or answered your question even. But at least you know that there's someone out there who's gone through the same thing as your daughter. If anything, I recommend looking for some hidden source of gluten that may still be contaminating or cross-contaminating. Someone here was mentioning something about wood utensils (probably because of the porosity) being a source of cross contamination, or old, scratched plastic containers. I hadn't thought of that until I read it earlier today. I use wooden utensils for cooking all the time, so I'm off to buy some new ones tomorrow, just to be sure.

I hope your daughter feels better soon. I'll keep her in my thoughts and prayers.

[Mrs. L]

Thank you, I just keep trying to believe this is all that's going on. I don't want to be missing something else.

It helps to hear someone else had a similar experience!

[ravenwoodglass]

Have you gotten her a new toaster only for her use? Also as previous poster mentioned cutting boards, colanders, scratched pans etc that have been used for gluten items need to be replaced for her food. Has she eliminated gluten from her toiletries, makeup, shampoos etc. If not she should. It is also not uncommon for us to get CC'd especially early on. Some stuff that looks gluten free can be CC'd (cross contaminated) by gluten in the plant it is processed in. Frito Lay products are the first ones that come to mind but it can occur with other products. For now she should avoid as much as possible processed foods and go with whole foods for a bit. Some of us have other sensitivities, soy is a common one and many of the specialty gluten free foods are heavy with soy. You may want to try eliminating soy and dairy for a time. Soy gives me the pain you describe but that may not be the case for her. Eliminating it for a while and then trying it in a couple of months and seeing if that happens again could be helpful.

[Philippa]

I'm sorry to hear she is having so much pain. I'm sure she is frustrated and discouraged. It does take some time, both for the body to heal and to eliminate all sources of cross-contamination. Personally I did start feeling better after about 2 weeks, but it took 4-5 months to really feel all the way better. Once I started to feel better I could tell when something had made me feel bad again--sometimes even things that are supposedly gluten-free, if you investigate more, really could contain traces of gluten. Going to mostly whole foods could help for now because eventually she may find that she is sensitive to some processed foods even if they are supposedly gluten-free.

It's a frustrating journey but be reassured, she will feel better in time.

[GFinDC]

Hi,

It does take time. It will go faster if she sticks to a whole foods diet and doesn't eat any processed foods. Usually organic or natural foods or ok, things with 2 or 3 ingredients that are food and not chemicals.

I had pain in that area for 9 years but it did go away after going gluten-free, Took about 9 months though. But we are all different and us old farts heal slower I suppose.

[jakeynogluten]

Hi there, I can sympathize with the pain your teen is feeling. I had the same sharp pain in my ribcage/chest area. It's finally gone away after 3 months gluten free. I just wanted to suggest something to you about the recovery process that may help it proceed faster. As you know, the villi in the small intestine are responsible for nutrient absorption from your dietary intake. When you have a severe case of celiac disease, these villi are atrophied/worn down and there is very little absorption of nutrients from food going on. Because your daughter isn't getting some of these nutrients and vitamins, it might be wise to start her on some vitamins and minerals. There is a lot of information on this forum about which ones to use and how they help. To give you an example, L-Glutamine is an amino acid that is known to be important in the repair of the small intestine. I had a severe case of celiac disease, I thought I was dying because of the extent of the malabsorption I was experiencing. I started a regime of vitamins, minerals and supplements and I think this contributed to my relatively fast recovery. If you would like more information, please let me know. Also, I would just like to tell you about costochondritis. It's an inflammation of the cartilage tissue in the rib cage and can cause the type of sharp pain that your daughter is experiencing. I don't know if she does or does not have this condition but it is common among celiacs. If her pain is being caused by costochondritis, then eating and drinking items that are considered non-inflammatory would be a good idea. Hope this helps and tell your daughter that she will get better but it takes time. Everyone heals slightly differently and we just have to be patient and trust that if we stay away from gluten, eat healthy foods and supplement properly...things will get better.

Much Love,

Jakey

[dilettantesteph]

I am going to second what some others are saying. Until she heals have her on a whole foods diet. No processed gluten free foods. You might want to avoid grains altogether as they can be contaminated. Also no soy for the same reason. Until she heals she most likely will be lactose intolerant so no dairy either.

Probiotics can help with healing. When we were healing the dairy free probiotics tasted so bad that we got the dairy containing ones and they didn't seem to be enough to trigger a lactose reaction.

Some celiacs are more sensitive to low levels of gluten than others. Until she heals she won't be able to see if she can tolerate things like gluten free bread and cereals. I also had pain which curled me into the fetal position pre diagnosis. I don't think it was as bad as your daughter, and I was fortunate enough to respond immediately to the diet. I hope that she feels better soon.

[Takala]

Ugh, costochondritis. It's the pits.

Yes it eventually goes away. But she may have to tinker with the gluten free diet and refine it for her own needs at first. I went completely grain free in the beginning, which is not as difficult as it sounds, I just used a lot of almonds and almond meal instead of grain. Once in a while a gluten free commercial substitute will sit in my stomach like a rock. I had gluten free pizza for dinner tonight which shouldn't be a problem (have eaten that brand of crust before and have eaten those ingredients before ) but this summer we stopped off at the store and bought some packaged gluten free cookies to eat on the way home, that were so unfriendly to my stomach I gave the rest to my spouse after eating just one.

Common additional problems are with dairy which you already are eliminating, and soy flours, milks, tofus. Also some people are sensitive to corn, and some are even sensitive to all nightshade family like tomatoes, peppers, potatoes. I ate sweet potatoes and yams at first and then gradually experimented with adding some regular potato back in. I seem to be okay with non lactose dairy, and corn but the soy in baked goods had to go. I don't know why I seem to be better with mayonnaise and have been looking for a gluten free soy free type that doesn't have OTHER stuff I don't want- doesn't exist. I cannot eat a LOT of tapioca at once, but can tolerate moderate amounts. Basically, take it easy on the commercial processed foods and try to have her eating fruits, vegetables, nuts, meats, fish, good fats such as coconut milk and coconut oil. Avocado, olive oil. Canned pumpkin can be good. If you use canned beans, always rinse them very well to get rid of the starch that is difficult to digest.

You can grind almonds easily in a blender and make quick bun in a cups "bread" just out of egg, oil, vinegar, and nutmeal with a bit of baking soda, salt, and sweetener. These cook up in about a minute and a half in a microwave. You can also do this with rice flour or whatever sort of gluten free flour substitute works, and there are dozens. Some people like flax and use some of that, but I think it tastes terrible and wasn't sorry to figure out what flavor that was, so I could use something else.

[GFinDC]

Ugh, costochondritis. It's the pits.

....

I don't know why I seem to be better with mayonnaise and have been looking for a gluten free soy free type that doesn't have OTHER stuff I don't want- doesn't exist.

...

Hellman's canola cholesterol free mayo is one soy free option in the USA. It's even marked gluten free.

[url=Open Original Shared Link

[Marz]

Is the pain in her ribs or underneath from the intestines? Just wondering if you had an ultrasound done to check for gallstones - that can be hellava painful, usually worse after eating something fatty, and with nausea. If it's in the ribs, chances are it's costochondritis, I get that after gluten accidents and it's pretty painful

Some other ideas : Is she soy free? She might want to leave out the gluten-free baked goodies for a few days and see if that's what causing pain. Soy makes me as sick as gluten, if not worse.

Nightshades - can cause stomach pain/nausea (personal experience...), especially when just starting out. Cut out potatoes, peppers, tomatoes for a few days and see if it helps.

You might want to go to another doc and get a second opinion, just let them know that she has been diagnosed with celiac disease, but that the pain is continuing and you want to eliminate all possible sources. Sounds like your current doc is a bit stuck with the first diagnosis, might be worth it to get someone who has a broader vision. Just because she has celiac disease doesn't make her immune to an infected gall bladder, in other words

I second the idea to use plain veges, fruit, meat for a few weeks. You want her food to be as bland as possible - no spices, sauces, added ingredients. Anything and everything can upset my stomach, so maybe something you're adding might be causing the pain. I can't eat any prepared cereals - they usually contain malt (Barley) or some sort of soy to ruin my day - stick to plain rice boiled up, polenta, maize meal - anything whole and unprocessed that you know can't contain gluten.

Is she keeping a food diary and her symptoms - can be useful to pick up patterns, eg if the pain is always gone in the morning, and starts up during the day, it could be something she's eating?

I hope it clears up soon for her!

[cyberprof]

I second the idea to use plain veges, fruit, meat for a few weeks. You want her food to be as bland as possible - no spices, sauces, added ingredients. Anything and everything can upset my stomach, so maybe something you're adding might be causing the pain. I can't eat any prepared cereals - they usually contain malt (Barley) or some sort of soy to ruin my day - stick to plain rice boiled up, polenta, maize meal - anything whole and unprocessed that you know can't contain gluten.

Is she keeping a food diary and her symptoms - can be useful to pick up patterns, eg if the pain is always gone in the morning, and starts up during the day, it could be something she's eating?

I hope it clears up soon for her!

I don't want to contradict you Marz, but I see you're in South Africa and I think the OP is in the US. Polenta, maize meal (cornmeal)is a processed food and in the US is NOT gluten free unless you buy special versions marked gluten-free (Bob's Red Mill is the only gluten-free cornmeal I've seen, and it's not available everywhere. Their regular cornmeal is not safe.)

If she's not in the US, then I will defer to someone with more knowledge.

So yes, eat whole foods but plain rice, plain meat, plain veggies, plain fruit.

[Marz]

I don't want to contradict you Marz, but I see you're in South Africa and I think the OP is in the US. Polenta, maize meal (cornmeal)is a processed food and in the US is NOT gluten free unless you buy special versions marked gluten-free

No problem, I had assumed it was gluten-free :/ Do they specifically add wheat starch/flour to the meal, or is it more of a CC risk? Wondering if I need to watch out myself for these items.

The "polenta" I have is just plain uncooked mashed up corn pieces, it should be safe for me, I hope...

[cyberprof]

No problem, I had assumed it was gluten-free :/ Do they specifically add wheat starch/flour to the meal, or is it more of a CC risk? Wondering if I need to watch out myself for these items.

The "polenta" I have is just plain uncooked mashed up corn pieces, it should be safe for me, I hope...

For the cornmeal, it's a storage and transport issue in the U.S., I think, where the corn is stored in silos that have previously had wheat, barley, rye...and ground on shared equipment.

Polenta is sold pre-made in the US and would be subject to the issue above unless made with special gluten-free cornmeal.

Is your polenta in SA made out of cornmeal or just chopped corn?