How long after being diagnosed with Celiac do you feel better?

[jnstefan]

My 10 year old daughter was diagnosed with Celiac 2 weeks ago. We've been on gluten free diet now for 2 weeks. She still experiences abdominal pain at times , and is struggling with fatigue. What is everyone's experience with how long it takes for the body to heal and stabilize after starting the gluten free diet? Thanks for any feedback!

[trents]

Welcome to the forum, @jnstefan!

She should start feeling better within a week or two if she is truly avoiding gluten and if she isn't also showing intolerance to other foods. It is quite common for celiacs to be dairy intolerant (not just the lactose but the protein casein in dairy) and to oats (protein is avenin). Casein and avenin have structures similar to gluten. We call this cross reactivity (not to be confused with cross contamination). So, you might look at pulling these two food items from her diet to see if there is improvement.

But achieving a gluten free state is more challenging than people realize when the first start in. It is hidden in so many foods you would never expect to find it in like soy sauce and canned tomato soup, just to site two examples. This might help:

 

[cristiana]

I think it takes different people different amounts of time, but in my own case I had pain,  bloating and loose stools for some time, exacerbated by a lactose intolerance, which eventually went.  I would say the really bad diarrhea got better quite quickly, but the bloating pain carried on for a few months, until I was told to give up lactose for a few weeks.  That helped enormously and once I realised milk and yoghurt was the cause, after a short break I went back to lactose very gradually and felt a lot better.  Now I can tolerate it well.

From Coeliac UK

"The enzyme lactase is found in the brush border of the small intestine. This is why people with coeliac disease can be deficient in lactase at diagnosis. Once established on a gluten free diet, the gut is able to heal and lactose digestion returns to normal. Lactose intolerance is therefore usually temporary."

So if this helps your daughter, this doesn't mean you have to give up lactose forever, especially as dairy is such a good source of calcium for growing kids.   Bear in mind you should be able to reintroduce it.

As for fatigue, this can be due to vitamin and mineral deficiencies,such as iron, vitamin D and B12.  Were these levels tested?  If not, I would suggest you get them done.  If your daughter is deficient in these, it is vital you address the deficiencies, and get the tests redone in a few months, particularly the iron, because too much can be dangerous.

Edited April 10, 2025 by cristiana

[Nathan.]

Hi there. My son is turning 16 this month. He had an endoscopy and biopsy to confirm celiac. He went gluten-free and his pain never got any better. I think it got worse. Months went by. The pain started around 7th grade. He missed a lot of school in 8th grade, and a whole lot in 9th grade. He couldn't go to school in 10th grade. All along the gastroenterologist prescribed Hyoscyamine, didn't help at all. Cyproheptadine, no less pain. Peppermint oil, ginger, Miralax, Senna. Doc said he was constipated, but I couldn't get him to have Miralax daily. Eventually he went on Linzess and no senna or Miralax. Sorry this is long, there will be a point.  We gave his school not just a doctors not, but everything, and U of M makes a lot of notes. They still turned us in for Truancy.  I didn't get him enrolled in online school fast enough.  The school would not recommend an online school and i didn't know which one to choose. 

Doc thought it was nerve pain and mental. He recommended the u of m my pain program.  Nathan did so good, 3 days a week supposed to be for 4 weeks.  Never missed, always on time.  

After two weeks, they discharged him. Said it was not  benefitting him. 

Pain went on. I had been asking if there were any other test they could do. Ultrasound, colonoscopy. Doc said we can do it, but I don't think we'll find anything. 

Finally he had a colonoscopy and another endoscopy.  Guess what, they did find something. They found a ton of tiny ulcers everywhere, from the esophagus to his rectum. They think Crohn's. I understand they didn't check for that because he was more constipated, not much diarrhea. He is getting an MRI with contrast on Sunday. Also they want him to do a cal-protectin (give a poop sample). Then an appointment on the 16th to talk about treatment. Then the probation officer on the 17th.

In the meantime he is taking Budesonide extended release.  $276.00 for 30 pills, and that's with insurance. Also he was diagnosed with hyperthyroidism, Graves disease a few months ago. If it is for sure Crohn's,  it will be three autoimmune diseases.

If someone is gluten-free for a month or more, and the pain is no better, don't stop looking. I was beside myself. Did they think he was exaggerating, lying?

I was considering taking him to a holistic doctor, who would probably recommend Peppermint oil and ginger. 

He's such a good kid. Kind of an introvert. He was on the 9th grade soccer team. He would try to go to practice and kept having to stop, the pain was that bad. Every time he ate, it didn't matter what, gluten-free chicken tenders, mac and cheese, pizza, ice cream, all gluten-free, he would eat a normal amount but stop and say, I can't eat anymore, my stomach hurts. 

If anyone reads all this, thank you. I had a gut feeling, no pun intended, that he had an additional problem. They found celiac and stopped looking. If you don't feel better, keep on your doctor to check further, keep looking.  

Take care,

Karen

 

[trents]

Thanks for sharing, Karen. Certainly a needed reminder what we already knew (and I've posted many times on this forum) but sometimes forget, namely, autoimmune disorders tend to cluster. Where one is found, you can look for others to show up eventually. The thing that is unusual in your son's case is the onset of several of them at such a young age. My sister in law, who is in her early 60's has Crohn's and struggles with constipation so I don't think that is unusual with Crohn's. If nothing else, it's the outcome of not eating much because of the pain.

Now that you know what is going on with your son and the Crohn's, we hope he is beginning to improve.

Edited April 10, 2025 by trents