Feeling Even Worse On A gluten-free Diet

[bianca]

My 9 year old daughter was diagnosed with Celiac. We have been gluten-free for 5 weeks and she is feeling worse. She has cramps from the morning to when she goes to bed at night and vomits most of her meals (she had been vomiting 3 weeks before the diagnosis. When she started the diet her vomiting slowed down to 2 a day but gradually crept up to 4 or 5 day. The doctors said she the new diet was making her constipated thus the cramps but now that she is having regular bowel movements the cramps are still 100% there. Any thoughts?

Worried and stressed out mother.

Biancafeeling even worse on a gluten-free diet

[FMcGee]

Oh, yikes. What is she eating? Have you cut out dairy? Can you take her to a different doctor? The vomiting seems worrisome. Is she on any medications? Could she have some kind of parasite? Has she been tested for Crohns disease? I have a friend I've known since I was born who had symptoms like those and was diagnosed with Crohns when he was about 13, and another friend diagnosed in her late teens. Impossible to say from here, of course, but a colonoscopy and a blood test for parasites (a problem I had myself once, after a camping trip) might answer some questions.

[sarahk47]

My 9 year old daughter was diagnosed with Celiac. We have been gluten-free for 5 weeks and she is feeling worse. She has cramps from the morning to when she goes to bed at night and vomits most of her meals (she had been vomiting 3 weeks before the diagnosis. When she started the diet her vomiting slowed down to 2 a day but gradually crept up to 4 or 5 day. The doctors said she the new diet was making her constipated thus the cramps but now that she is having regular bowel movements the cramps are still 100% there. Any thoughts?

Worried and stressed out mother.

Biancafeeling even worse on a gluten-free diet

Is it possible she has hidden gluten in her diet or is getting cross-contaminated? Otherwise, I would think that maybe celiac isn't the only thing going on.

[ang1e0251]

What is her diet like? I agree it could be sneaky gluten or another intolerance.

[bianca]

Thanks so much for all your responses! I was feeling so alone on this. My daughter is off dairy products except for things such as a rice crackers with a cheddar flavor. Cross-contamination is a possibility because I am a novice at this but I think I have been really careful. Two naturopaths have suspected a parasite-one detected it through the dermal type of test, and the other one felt that is what she had due to her symptoms. Medical doctors have all disagreed with this when I suggested it because they felt her symptoms did not indicate this. In the last week she has also been off corn but that has showed no change in the vomiting or cramps. She has not had a colonoscopy but she had blood tests testing for indicators of crohns which came back as normal. We are back to see the pediatric GI next week but so far in the limited contact I have had with him he has been quite useless in explaining why she is actually feeling worse.

Any thoughts about the theory about adverse reactions from suffering from withdrawal from gluten?

thanks,

Bianca

[FMcGee]

I have no medical knowledge about this, but I've definitely felt nauseated myself in the last several days, and somewhat crampy. Maybe it is gluten withdrawal, or maybe your daughter and I have the same problem, or maybe it's coincidence, but all of the tests I've had done so far have come back as normal, except the ones that diagnosed me as a celiac. I got a few more done (vitamin D, iron, thyroid) and those aren't back yet, but if they do come back with anything interesting I'll let you know. Have you had that blood work done?

[Nancym]

I'd be suspicious of something new you've added to her diet to replace gluten containing foods. Could you back off on the manufactured products and stick to whole, natural foods like meat, fish, veggies, fruit?

[ang1e0251]

I agree. When someone describes initial improvement, then gradual decline, it's usually one of two things, IMO. Either they've branched out their diet and one of the new foods has Sneaky gluten or there is a new intolerance.

Give an example of what she eats in a day. I'm going to guess there is a spice or a processed food that is getting her. I agree she should only be eating simple whole foods; rice, meat, fruits and vegetables that you prepare yourself. Purge all your seasonings. Look at the ingredients. Lots of them add wheat or barley. Try to use one ingredient spices for her for now. Throw out any spice you may have dipped a gluteny spoon into. Do not give her any processed foods even if they say gluten free. Those often have small amounts of gluten. It's thought that we can tolerate those small amounts but plenty with celiac disease can't even have that small amount.

If she eats this way for at least a month and shows improvement then you are on the right track. If there's still no improvement, something else is wrong. In the meantime, if you are scheduled at the dr's, of course try to get answers that way. Vomitting is too serious to ignore.

[QueenOfPain]

I definitely experienced gluten-withdrawal during the first couple months of my new diet. However, I did not experience any vomiting. My side cramps and headaches actually improved, BUT my horrible diarrhea (sorry TMI) got WAAAY worse. Immodium wouldn't even help stop it. =(

I agree with ang1e0251's advice. Try to cook simple foods -- fresh meat, fresh vegetables, fresh fruit and rice. I was told that the gluten-free breads and pastas can be difficult to digest, especially in the beginning when the body is trying to heal itself.

[bianca]

I definitely experienced gluten-withdrawal during the first couple months of my new diet. However, I did not experience any vomiting. My side cramps and headaches actually improved, BUT my horrible diarrhea (sorry TMI) got WAAAY worse. Immodium wouldn't even help stop it. =(

I agree with ang1e0251's advice. Try to cook simple foods -- fresh meat, fresh vegetables, fresh fruit and rice. I was told that the gluten-free breads and pastas can be difficult to digest, especially in the beginning when the body is trying to heal itself.

Thank you for the support. I will try an even simpler diet.

[bianca]

Hi again,

An update on my daughter. Her blood work reflects that the gluten-free diet is working. (iron is up and TGG is lower) She has grown and 1 1/2 inches and gained a pound.

Since starting the gluten-free diet she still has cramps all day. The pediatric GI and 2 Pediatricians have no idea why but do not think it is the celiac. The vomiting has never stopped but has slowed down the last week due to some pills the naturopath recommended. Since she does not respond to any ant-acids he tried the opposite-adding acids from a natural source-called betaine hydrochoric acid (includes pepsin). It has reduced it from 4 to once a day. Yah! I hope this helps someone else too.

Any thoughts on stopping the cramps?

thanks,

Bianca

[ang1e0251]

I find I still get cramping when eating alternate grains. I went on a very low carb diet and didn't eat any grains for a few weeks. Suddenly, no more cramps! Now I eat a little but I really feel best when I restrict the alternate grains. I do best with corn but many others cannot tolerate it. I still think the food diary with noted symptoms can help you narrow this down. Do not expect her dr's to know, it's really very different for each individual person. You will have to figure it out for her.

[GottaSki]

I agree...simplify!

I'm at 3 months. Had a very rough time from about 3 weeks on - health wise. My symptoms got worse during that time....we became more diligent with cross-cont issues and ate simple foods - eggs, meat, veggies, rice, fruit.

Hang in there - just takes time - I have only slightly improved, but am very hopeful for more improvement. Older bodies can take much longer to heal - I've got a grandbaby and a 15 year old that are improving much more quickly than I, so hopefully your daughter's youth will aid with the healing.

Hang in there, keep that detective hat close and congratulations on the improvement in the blood work! I hope your daughter continues to improve and the serious reactions subside.

[tarnalberry]

a neighbor's child had similar (though not quite as much vomitting) symptoms. turns out it was soy intolerance - no more soy! (so, almond milk, rice milk (but not rice dream), hemp milk... trouble was it was hard to keep soy out when she was dairy free as well.)

[one more mile]

I would look at what was added to her diet. I found that I cant eat Soy, it just kills me. or much corn meal. I would stick to basic foods, those that are not processed then slowly add. I also could not eat lettuce, any form for a few months.

[PattiD2]

I'm not on this board very often, any more but I happened to see this thread so I thought I would add my input. My 15 year old DD has been diagnosed with celiac disease and eosinophilic esophagitus (EE). Eosinophils are white blood cells that are normally used to fight parasites. In this case, the body mistakenly reacts this way to certain foods causing inflammation in the esophagus or other parts of the gi tract. DD had difficulty swallowing, inflammation, nausea, fatigue and severe abdominal pain. Reactions are delayed and often happen after being exposed to a certain amount of the food so hard to track down triggers. www.apfed.org has more information if you are interested.

Patti

[linda7276]

Yes, I agree with all of the previous posters....simplify the diet, nothing processed, gluten is hidden in so many things and they use different names, I myself as diligent as I try to be, get accidently glutened from time to time, we all do. Here is a link to safe and unsafe food lists here on the site that you can download:

https://www.celiac.com/categories/Safe-Glut...3B-Ingredients/

You really do have to read all labels, that's why it's so much easier to stop all processed food. And if you are preparing her food in a kitchen where gluten is prepared you have to be concerned about cross contamination. Even the slightest amounts make me sick. Everyone is different but with her symptoms I would say she can't tolerate any. You have to use a different toaster for her...separate pots and pans, etc. A pain, but it has to be done, I'm lucky because I am the gluten intolerant one and also the only one in the kitchen. My husband eats what I eat...period....

Soy is another HUGE offender and more than likely should be stopped, if for no other reason than that it's genetically modified. Corn and dairy should be stopped also, that cheddar you mention could be the problem. I wish you well and success, it sounds like she is doing well in terms of growth and those good lab results, it just takes time to get there but you will, she is much better than she was....

[hannahp57]

EE sounds like a definite possibility.

also those pills to increase acid should be a huge help. i have been reading up on low stomach acid because there for a while i was getting really bad cramps and i am very strict in my kitchen. i read that low stomach acid means some proteins cannot be properly digested which leads to cramps, diahrrea and bloating and all kinds of other issues. indegestion and heartburn. i dont think i read anything about vomiting though but it is a possibility. but you seem to already be on the right track! good luck and keep us updated on how your little one is

[hannahp57]

EE sounds like a definite possibility.

also those pills to increase acid should be a huge help. i have been reading up on low stomach acid because there for a while i was getting really bad cramps and i am very strict in my kitchen. i read that low stomach acid means some proteins cannot be properly digested which leads to cramps, diahrrea and bloating and all kinds of other issues. indegestion and heartburn. i dont think i read anything about vomiting though but it is a possibility. but you seem to already be on the right track! good luck and keep us updated on how your little one is