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Getting Worse After Starting gluten-free Diet

milkmommy

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milkmommy Apprentice
milkmommy
Posted

HI,

I am not sure if this is normal or if anyone has a similar experience but I am I would love to figure out whats going on.

I went gluten free 13 days ago after an endoscopy. For the last 9 days I have had worse abdominal pain than I have ever had!!! It seems to be in the same place as it has been for 18 years - my upper left side, and radiates to my left chest, shoulder and back. But it is much always there now and worse!! I went to my family dr and am going for an ultasound and bloodwork but I am very confused. I thought I was supposed to get better now that I know what is wrong not worse. I have been very strict about eating gluten free.

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rgarton Contributor
rgarton
Posted

I initially got worse, i think people put it down to gluten withdrawal! Which seems odd but i had exactly the same pains and all for about 4 months, which hopefully won't be as long for you! After 4 months i started to feel a bit better. Good luck!

quincy Contributor
quincy
Posted

HI,

I am not sure if this is normal or if anyone has a similar experience but I am I would love to figure out whats going on.

I went gluten free 13 days ago after an endoscopy. For the last 9 days I have had worse abdominal pain than I have ever had!!! It seems to be in the same place as it has been for 18 years - my upper left side, and radiates to my left chest, shoulder and back. But it is much always there now and worse!! I went to my family dr and am going for an ultasound and bloodwork but I am very confused. I thought I was supposed to get better now that I know what is wrong not worse. I have been very strict about eating gluten free.

your profile says you have severe damage so I hope that you are off ALL dairy. make sure all of your products are dairy free. I was worse after going gluten free and my pain was on my right side and my rib cage in the back. You must also have your bone density checked to make sure you do not have osteopenia or osteoperosis.

your vitamin D levels must be checked as well you might need to be on high doses of D, B6 B12 etc. based on your description of biopsy you are probably vitamin deficient as well as lactose/dairy intolerant . go easy on all processed foods too. Everything I ate just made me sick. it took me 5 months to start to feel close to better but it is a long process....

heal well.

T.H. Community Regular
T.H.
Posted

Okay, first - have you called the GI who did the endoscopy to make sure this can't be a result of your body reacting to anything from the endoscopy? I would think 5 days would be a bit long to start having a reaction, but I don't know enough to be sure.

What are you eating? If you are trying gluten free foods, like the cereals/breads and such, you might want to ditch 'em for a few days, keep a food journal, and see if that helps. Just eat fruits/veggies/meats and such (I agree, no dairy is usually best for the first couple of months).

You might be in the same boat as me: I turned out to have an allergy to something that is MORE prevalent in gluten-free foods. So I felt much sicker on a gluten-free diet almost immediately, too.

For me, it turned out to be sugar cane, which is less processed in most gluten-free foods, and so there is more allergen. However, I have also heard that many people have trouble with the gums used much more frequently in gluten-free foods, like xanthan gum. That tends to cause pretty bad stomach pain, I understand. Also corn and potatoes are more prevalent in gluten-free foods.

I've been told - and experienced - that many people who go gluten free suddenly start having worse reactions to their intolerances/allergies than they did before (like their bodies finally have the ability and resources to react, kind of). I had no idea I had ANY food allergies, as I wasn't getting hives or anything. But turns out I have a few that I get definite reactions to, and they were primarily gut issues.

My daughter is the same. Different foods she can't have, but her stomach pain started AFTER going gluten free.

Hoping your find the answer soon!

milkmommy Apprentice
milkmommy
Posted
  • Author

Thank you for responding

I have still been eating dairy in the form of yogurt and cheese. I also have tried some gluten free products. In particular I eat an 'enjoy life sunbutter bar everyday'. I have been eating a fair amount of rice and corn chips too.

I already knew msg, aspartame and any vegetable with a skin( peas,corn,etc) cause me great pain. I gave those up months ago before I knew I had celiac.

I haven't called the dr who did the endoscopy. He has been away so I've been dealing with my family dr. I waited until this past Friday to even get checked. I'm waiting on xray and ultrasound reports. I know it sounds silly but I hate to call any dr because I've always been told "it's just your bowels, nothing serious" Or " it's ibs and all in your head". I guess they were wrong but after over a decade of being told those things you feel like your crazy.

How do I figure out what might be hurting me?

T.h. How did you figure out that it was sugar cane that was effecting you?

Can they test me for these things?

I am so cOnfused and getting quite distraught about all this.

quincy Contributor
quincy
Posted

Thank you for responding

I have still been eating dairy in the form of yogurt and cheese. I also have tried some gluten free products. In particular I eat an 'enjoy life sunbutter bar everyday'. I have been eating a fair amount of rice and corn chips too.

I already knew msg, aspartame and any vegetable with a skin( peas,corn,etc) cause me great pain. I gave those up months ago before I knew I had celiac.

I haven't called the dr who did the endoscopy. He has been away so I've been dealing with my family dr. I waited until this past Friday to even get checked. I'm waiting on xray and ultrasound reports. I know it sounds silly but I hate to call any dr because I've always been told "it's just your bowels, nothing serious" Or " it's ibs and all in your head". I guess they were wrong but after over a decade of being told those things you feel like your crazy.

How do I figure out what might be hurting me?

T.h. How did you figure out that it was sugar cane that was effecting you?

Can they test me for these things?

I am so cOnfused and getting quite distraught about all this.

the only cheese I was advised to try was Cabot's 75% fat free yellow cheddar. Even that made me sick. I can eat corn chips now w no problem but anything too oily or fatty my system just could not handle at first. I would eliminate ALL dairy and chips right now, no processed snacks, just basic lean protein and soft veggies like cooked carrots. if you have folds and severe damage your small intestine cannot digest heavy or fatty foods for awhile. I would stick with lightly grilled chicken breast, some white or brown rice, eggs perhaps if you tolerate them and soups and potatoes not too much butter. I would also suggest you get a good nutritionist to advise you based on the endoscopy. each person is different, I cannot even tolerate lactose free dairy so I just stay away or else I react as if it was gluten.

domesticactivist Collaborator
domesticactivist
Posted

I agree with the others who say to check into possible complications from the endoscopy, and to avoid gluten-free foods and dairy for now.

I'm not celiac, but when our family went off gluten I suddenly developed horrible constipation and all my neuro stuff got worse. It was related to gluten-free products and flours. I also discovered that corn wasn't good for me. My son got a lot better, but not 100%. We didn't really start feeling great until we started the GAPS diet a couple months after going gluten-free.

The GAPS diet is aimed at restoring gut health and I've posted a lot on it, or you can message me for some links.

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domesticactivist Collaborator
domesticactivist
Posted

I agree with the others who say to check into possible complications from the endoscopy, and to avoid gluten-free foods and dairy for now.

Um, by gluten-free foods I meant packaged crap that's marked "gluten-free", and even things like baking mixes.

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