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Going Through Alot Of Tests For Celiac And Crohn's

sarahlarry

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sarahlarry Newbie
sarahlarry
Posted

I have had stomach issues since I can remember and notwI am almost 29 years old and they are getting more severe. I will end up in severe pain and I can't move and It lasts for hours. I have always been lactose intolerant but could still handle eating ice cream, mac and cheese and other dairy and would bascily just end up with gas, not pain. I saw a GI doc when I was pregnant almost two years ago and he did a scope and I think was looking for an ulcer and fould nothing and said I had IBS. I think I do have some of the systoms of Celiac but also lactose intolerence so I am confussed. My husband and I have very basic ins and It is going to cost in the thousands to get all these tests done. I am thinking about going glutin-lactose free without getting a definate answer. I already got special blood work done and am still waiting for the results and tomorrow I am getting CT and next week a lower bowel. I have read that some peolpe never get a exact answer so why spend thousands of dollars for the chance that nothing is fould. Hopefully my husband with get a job after he finishes his school in september so then I can get the EGD done. I basicly am looking for advice.

SArah

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Guest Villanfam
Guest Villanfam
Posted

I am still really new at this myself. I just turned 29 in Nov. and have had celiac symptoms since I was a child (8 is my earliest memory). I really just thought it was normal to have stomach aches all the time and be either severely constipated or have diarrhea all of sudden. I remember when I was little I would punch myself in the stomach just so it would feel better for second, crazy I know. I have not been diagnosed with celiac disease, mostly because I do not have Health Ins. I did have 2 of my 3 kids tested (antigliadin test IgG and IgA) they both came back + with elevated IgG and IgA. I recently took my kids to a Ped GI, because I wanted to find out if they were healing like they should be. He said that the tests that they did (antigliadin test) were outdated and bad and they just shouldn't do them anymore. He said I should keep feeding them gluten :o

If you want to try being gluten-free (100%) to see if you feel better then you can try that. I've found that it is really hard for Dr's to take you seriously without a confirmed diagnosis (like my sit. with my kids). So if you went gluten-free and then wanted them to do an endoscopy or other test to see if everything is healing or to see how much damage has been done, it's not as easy to get them to take you seriously. It's kind of a catch 22. Sorry if I'm not more help.

Good luck with whatever you decide :)

Courtney

Nancym Enthusiast
Nancym
Posted

Changing your diet is virtually free and should give you at least some idea of if you're on the right track. Some people need the "whip" of a positive diagnosis to keep them on track though. Ask yourself if you're that sort of person or will just feeling better be reinforcement enough. Another option is to use Enterolab.com which is much cheaper, but not well recognized or accepted by most physicians.

Personally, I think that I'm the expert of what makes me feel good and bad. They're only there for when the there are things I can't take care of myself.

Guest Villanfam
Guest Villanfam
Posted
Changing your diet is virtually free and should give you at least some idea of if you're on the right track. Some people need the "whip" of a positive diagnosis to keep them on track though. Ask yourself if you're that sort of person or will just feeling better be reinforcement enough. Another option is to use Enterolab.com which is much cheaper, but not well recognized or accepted by most physicians.

Personally, I think that I'm the expert of what makes me feel good and bad. They're only there for when the there are things I can't take care of myself.

I did keep 2 of my 3 kids

GlutenWrangler Contributor
GlutenWrangler
Posted

Do what you think is best for yourself and your family. When it comes to celiac disease, doctors are usually worthless disappointments. Try Enterolab if you want help from people who actually care. Good luck.

-Brian

sonja69 Rookie
sonja69
Posted

I think not only with celiac, doctors are disappointments....

however, I have been tested negative for celiac, but I am glutenfree now. my symptoms have gotten severe the last month so I had no choice, but try glutenfree.

I was also tested twice for lactoseintolerance, 1st was positive, 2nd was negative. the problem is that sometimes, if I eat dairy (party or of frustration), albeit rare, sometimes i have no problems, sometimes I have problems, but I am never sure if it's really the lactose or something else. so I strictly avoid lactose.

this may be explained (at least I believe it) that when your intestinal mucosa is damaged with celiac, it's quite often patchy, and in some healthy patches, lactase (the enzyme) is produced and can break down lactose, but when your food reaches a non-healthy patch, there's no lactase to break down the lactose.

sorry, cannot help you more, I am also very confused. I have very seldom diarrhea and no pain, though very weird stools and I am always bloated (sometimes I wish for diarrhea to get the 'stuff' out more quickly), a livelong pregnancy I have to carry...and just as Villanfam, I punch my stomach because I am so angry about my body making such trouble all the time. I cannot remember the last time I felt good, I have problems with my stomach for over 20 years now.

try gluten- and lactosefree, it cannot harm and hopefully you feel better!

good luck,

Sonja

(sorry for the language, I am german)

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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