13 y/o new celiac dx and joint pain

[MG1031]

My daughter, 13 was dx 2 months ago. Since then we have gone gluten free. We have also cut dairy, corn, most sugar and soy. She continues to have moderate abdominal pain and severe joint pain (mostly hips and legs). I’m feeling really discouraged that she has not had any symptom relief. Is there anything I can do the help with joint pain? We already take epsom baths, CBD oil at night and magnesium cream. 
 

[trents]

Welcome to the forum, @MG1031

What about oats? Dairy and oats are the two most common cross reactors in the celiac population. The oat protein "avenin" is similar in structure to the protein gluten. Chicken eggs is another common cross reactor.

Is your daughter on any vitamin and mineral supplements? The damage to the villous lining of the small bowel caused by celiac disease can greatly reduce nutritional absorption efficiency and typically results in nutritional deficiencies until that lining has experienced substantial healing it is appropriate to supplement with some high potency vitamin products. On this forum we routinely recommend B-complex, D3, magnesium (magnesium citrate or magnesium glycinate, not magnesium oxide) and zinc (picolinate form is best). Make sure all are gluten free. Costco is a good source if you live near one.

[MG1031]

We have stayed away from oats but she does eat eggs daily. That will be next off the eat list! 
We are waiting for blood work to show all deficiencies. She is for sure iron deficient and has already required 2 blood transfusions plus IV iron infusions. She takes iron supplements daily so I thought maybe that is contributing to abdominal pain? 
I have been giving her mag, D3 and organ complex pills. I just don’t think the dose may be high enough. We have a doc appointment this week so I’m hoping to get on a better regimen. 
Celiac is very hard and I hate to see my dtr in pain. 
Glad I found this forum though!
 

Thanks for responding @trents

[trents]

When our children hurt, we hurt too! Every parent can identify with what you are saying.

Iron supplements can definitely gripe the tummy! Are you using an enteric form of iron that is easier on the stomach?

What kind of mag have you been giving her? The most common form you see on store shelves is magnesium oxide and it isn't absorbed very well. This is also why it can act like a laxative (Think, milk of magnesia). Try magnesium glycinate. The form of a vitamin or mineral can be very important in how well it is absorbed. Many common vitamin products on grocery store shelves use forms of the vitamins they contain that best for long shelf life but not for absorption. I would also mention that many vitamin and mineral blood test ranges may be check for levels compared to what is "normal" but that is not the same as what is "optimum". D3 may be the best example of that. 

Don't hesitate to give her high potency B-complex. It's almost impossible to overdose on B's because excess is just peed out. And the original cautions from years ago about overdosing on D is being relaxed as medical science is now realizing the concern was a little overbaked. 5000IU of D3 daily is not going to create toxic levels, at least not when given for a limited period of time. However, if your daughter spends lots of time outdoors and you live in a sunny place this likely isn't necessary. I live in the Pacific Northwest where we don't see the sun much from November through April. But even in sunny climes, most people spend most of their time indoors in modern day culture.

 

Edited October 14, 2024 by trents

[Scott Adams]

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[trents]

By the way, B12 is necessary for the uptake of iron. B12 deficiency is extremely common in the celiac population and, of course, plugs right into the fact of anemia also being extremely common in the celiac population. Some people have a form of anemia known as pernicious anemia in which the anemia is caused by the death of the parietal cells in the stomach. The parietal cells are where "intrinsic factor" is produced, an enzyme necessary for the absorption of B12 which, in turn, is necessary for the absorption of iron from the diet.

[cristiana]

I had rib pain, but also hip and leg pain - google sacroiliac pain, it's common in coeliacs.

SI joint pain affects the hip, buttock and thigh area.  When I had it at its worst it was incredibly painful, a sort of burning sensation. If this is what your child is experiencing, she may find it helpful not to wear tight jeans or waistbands.  Any pressure around the area exacerbated the pain greatly.  Also, I am sure the lower quadrant bloating I was experiencing at the time made things a whole lot worse, that internal pressure seemed to add to the pain.  

One other thing is that it is important that your daughter wears the right shoes, avoiding very flat unsupportive soles or heels, and doesn't overdo exercise that jarrs the joints. 

The good news is that for me it did get much better as my gastric symptoms improved, particularly the bloating - but it did take a few months. 

You may find these links helpful:

https://www.spine-health.com/blog/common-triggers-si-joint-pain-and-how-prevent-flare-up#:~:text=The SI joint can become,the joint to flare-up.

https://pubmed.ncbi.nlm.nih.gov/19504097/

If your daughter is experiencing rib pain, that could be costochondritis.  I had that too, and a similar sort of burning.  Again, when my GI symptoms improved so did the pain.  Bloating will still kick it off from time to time.

But I am glad you are having D levels checked, as low levels can contribute to joint pain.

Edited October 15, 2024 by cristiana

[MG1031]

@cristiana, good points! Never thought about the shoes and she lives in tight waisted shorts- Thank you! 

[Wheatwacked]

Watch out for those shoes with wobbly bubblewrap soles and insoles to make them comfortable.  They put a lot of stress on legs trying to compensate for the wobble.

Gluten free foods are not required to fortify with the vitamins and minerals as non gluten free foods are.  Make sure she is getting enough.

Low Thiamine can cause Gastrointestinal beriberi.  Choose vegatalbles with low omega 6.  It is inflammatory.