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Healing after celiacs testing

Elassila
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Elassila Newbie
Elassila
Posted

I had been gluten free for about a year and suspected celiacs when my doctor insisted that I eat some wheat to get tested. It was miserable and I tested positive on 2 blood tests. Now my gut is very messed up after about a month of eating wheat. Terrible doctor. What can I do to heal? It's been about 2 months and I'm still experiencing issues. So far I've tried bone broth, apple cider vinegar, and intermittent fasting.These all helped but I'm not 100%. Now I'm going to try cutting out dairy for awhile.

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GFinDC Veteran
GFinDC
Posted
1 hour ago, Elassila said:

I had been gluten free for about a year and suspected celiacs when my doctor insisted that I eat some wheat to get tested. It was miserable and I tested positive on 2 blood tests. Now my gut is very messed up after about a month of eating wheat. Terrible doctor. What can I do to heal? It's been about 2 months and I'm still experiencing issues. So far I've tried bone broth, apple cider vinegar, and intermittent fasting.  These all helped but I'm not 100%. Now I'm going to try cutting out dairy for awhile.

Blood antibody testing is usually the first step in celiac diagnosis.  The second step is an endoscopy to take biopsy samples of the small intestine lining.  if your doctor is planning to do an endoscopy you will need to be eating gluten for a couple weeks before it.  So it would be good to talk to the Dr. and find out what's next.

Stopping dairy and oats can both be helpful to relieve GI symptoms.  Also you can try probiotics, peppermint tea, and Betaine HCL.   Whole foods instead of processed foods are also helpful.

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Scott Adams Grand Master
Scott Adams
Posted

I do wonder if a gluten challenge for some people is worth the risks, especially in your case where it seemed that you had figured it out, and were happily gluten-free. Obviously I wasn't privy to your conversation, but asking a celiac, even a self-diagnosed one, to eat gluten for a month to prove that your self diagnosis is correct is just wrong.

If you go to your doctor and are unsure of your self diagnosis, and wish to be certain, I can understand a doctor recommending a gluten challenge. It sounds like your doctor wanted to prove that your self diagnosis was wrong in this case, and in the process has negatively impacted your health. It's too bad this had to happen, because the gluten-free diet, as long as you make healthy choices, is not in any way harmful, even to someone who might not need it and might have misdiagnosed themselves. 

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RMJ Mentor
RMJ
Posted

Your doctor isn’t terrible, he/she is just following established guidelines recommended for the official diagnosis of celiac disease.  Unfortunately those guidelines are absolutely terrible for some patients.

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Scott Adams Grand Master
Scott Adams
Posted

I may have been too harsh, especially not knowing how the conversation went, but my thought here was that if you told them you’re gluten-free and doing fine, but they pushed you into a gluten challenge, that approach seems wrong to me. I would have told you that you’ve probably got gluten sensitivity and not pursued a celiac diagnosis unless that’s what you wanted.

Hopefully you’ll recover quickly!

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Sascha-VG Newbie
Sascha-VG
Posted
11 hours ago, Scott Adams said:

I may have been too harsh, especially not knowing how the conversation went, but my thought here was that if you told them you’re gluten-free and doing fine, but they pushed you into a gluten challenge, that approach seems wrong to me. I would have told you that you’ve probably got gluten sensitivity and not pursued a celiac diagnosis unless that’s what you wanted.

Hopefully you’ll recover quickly!

Completely agree with you, Scott.

I have been diagnosed celiac via bloods for nearly 2 years - that's 2 years of gluten free lifestyle & my symptoms have been relieved for some time now. My doctor has been pushing for the endoscopy, however I know how backwards I go when I am exposed to cross contamination, and cannot bare the thought of the damage that could occur for a 100% accurate diagnosis of the disease.

In other cases where symptoms haven't been relieved from a gluten free lifestyle, I can understand the importance of further testing and diagnosis. It's really about listening to your body - we generally know what is right for ourselves if we listen to what our body tries to tell us. 

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DJFL77I Experienced
DJFL77I
Posted
On 1/1/2021 at 1:06 PM, Elassila said:

 What can I do to heal?

stop eating gluten

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JoaoLima Newbie
JoaoLima
Posted
On 1/1/2021 at 7:06 PM, Elassila said:

I had been gluten free for about a year and suspected celiacs when my doctor insisted that I eat some wheat to get tested. It was miserable and I tested positive on 2 blood tests. Now my gut is very messed up after about a month of eating wheat. Terrible doctor. What can I do to heal? It's been about 2 months and I'm still experiencing issues. So far I've tried bone broth, apple cider vinegar, and intermittent fasting.These all helped but I'm not 100%. Now I'm going to try cutting out dairy for awhile.

Hei! 

For me, what helped a lot to recover is probiotics, B12 supplementation, vitamins and i started eating only certain vegetables for a few weeks, mostly soups. I have a fiber supplement too. I have seen some improvements, but it is very easy to eat something that reacts. In my case, soy, oats, quinoa (the worst) and nuts. I would advise to search in the forum about any ingredient you wish to add to your diet before doing so. And since you have still symptoms, rotate the things that are already in your diet. Any of them could be reacting :)

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    • trents
      Pretty desperate for some guidance

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      Welcome to the forum, @Pua! Yes, many, many forum participants have been in this same boat. That is, suspecting celiac disease and testing the waters by going gluten free but then realizing they undermined the ability to bet tested for it by doing so. It's a very common mistake??? but a completely understandable decision making sequence. The symptoms you describe in both you and your son are strongly suggestive of celiac disease or at least NCGS (Non Celiac Gluten Sensitivity). It is also true that a high percentage of those with celiac disease (one small study found it to be 50%) react to CMP (Cow's Milk Protein) like they do the gluten in wheat/barley/rye. And about 10% of celiacs also cross react to the protein in oats (avenin).  Although it doesn't seem prudent at this point to seek testing for celiac disease since it would require you and your son to be eating regular amounts of gluten for weeks leading up to the test, it might be helpful to seek genetic testing to see if you and he have the genetic potential to develop celiac disease. If you don't have any of the celiac genes, you should look at NCGS instead. Genetic testing doesn't require a "gluten challenge". Are you nursing your son? You might look into a hypo allergenic baby formula called Neutrogena.
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      Pretty desperate for some guidance

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    • Pua
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      By Pua · Posted

      Aloha, could use a little insight from those who are familiar with celiac. I’m starting to think my dad , me and my son all have it As a kid I had severe stomach cramps and constipation. I would sleep on the bathroom floor all night often and the pain waves would end in diarrhea. I vomited often. Easy bruises, vitamin d&b12 deficiencies, asthma,  iron deficient anemia, chronic sickness, fluid in ears, hearing loss, adhd, depression, and as I got older extremely heavy periods, mood swings, and severe allergies where doctors would prescribe me epipens saying  I had a reaction but allergists would say I’m not allergic to anything. I’ve been so sick my whole life until I randomly decided to cut out our gluten because I was so tired of doctors. Felt great and all my symptoms started going away.    when my son was born people started making us meals and I ate gluten again and was breastfeeding. My son was always projectile vomiting, colic, acid reflux, screaming all night and day and doctors did what they did with me and treated symptoms separately. He’s 14 months now and always severely constipated, has stomach pains, poor sleeping, always had red eyes, loses weight, fluid in ears, rashes, 4 ear infections in 2 months. we don’t feed him dairy but started giving gluten when he was about 11mo old.  doctors just say to give him formula still , MiraLAX, acid reflux meds, no dairy and I feel like I’m symptom chasing just like I was my whole life.  has anyone had experience with toddlers having celiac? I didn’t do the blood test because poor guy has been under so much testing and er visits and I stopped giving him gluten 2 weeks ago so I didn’t want to do it for a negative test.  I also had all the same issues he’s having when I was a baby    I don’t want to eat gluten for long periods just for a positive test but has anyone been in this boat? Does celiac get progressive because I believe my dad has it too and his health is even worse than mine  mahalo       
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