In Chronic Pain

[acod]

Hi

I am posting for my son who was diagnosed with Celiac in November, 2006. We have been gluten free for 12 weeks. We began by cleansing our kitchen of all all signs and history of gluten laden products and utensils, and embarking on a freshly made diet of organic gluten free foods. Throughout the entire process, my son continues to call out, day and night, in pain. He hurts in his abdomen, on both sides, just below his belly button. We have had 3 CT scans, and MRI and different blood tests checking for problems, other than Celiac. What we are wondering is, how many of you have suffered from intense, constant, and what is now, chronic, pain? How have you or are you coping? We have seen pain psychologists, acupuncturists and try and do some yoga each day, but none of these have given him relief. Perhaps we need time. If you have any experience or history like this, please share your story and your suggestions.

Thanks so much

ACOD

PS: His last blood test (taken at 8 weeks) still showed high levels of antibodies. His endoscope showed complete atrophy of his intestine.

[sherylj]

Hi

I am posting for my son who was diagnosed with Celiac in November, 2006. We have been gluten free for 12 weeks. We began by cleansing our kitchen of all all signs and history of gluten laden products and utensils, and embarking on a freshly made diet of organic gluten free foods. Throughout the entire process, my son continues to call out, day and night, in pain. He hurts in his abdomen, on both sides, just below his belly button. We have had 3 CT scans, and MRI and different blood tests checking for problems, other than Celiac. What we are wondering is, how many of you have suffered from intense, constant, and what is now, chronic, pain? How have you or are you coping? We have seen pain psychologists, acupuncturists and try and do some yoga each day, but none of these have given him relief. Perhaps we need time. If you have any experience or history like this, please share your story and your suggestions.

Thanks so much

ACOD

PS: His last blood test (taken at 8 weeks) still showed high levels of antibodies. His endoscope showed complete atrophy of his intestine.

I am new to the forum but want to welcome you and encourage you to stay with the gluten free diet. If his intestine was so damaged it will take time so I wouldn't give up. Did you also cut out dairy products? Those will cause pain because the damaged intestine can not absorb the dairy.

Did you have an allergist test for other possible allergens? Just ideas. There are people much more knowledgeable than myself who will respond to your post soon. Welcome. And give yourself a pat on the back for cleansing the kitchen. Some one recommended this book to me "Special Diets for Special Kids" by Lisa Lewis. I have not read it myself but you may to check it out.

[RiceGuy]

Welcome to the board!

I'm so glad you have taken such important steps in getting gluten-free. For many of us we find out about our gluten intolerance only after many years of suffering.

As for the pains and such, I along with many here will suggest two things: A Sublingual methylcobalamin (vitamin B12) supplement, and a magnesium supplement. For me these have made such a difference that I find it elusive to put it into words. If your child is young enough to make sublingual (under the tongue) difficult to administer, then perhaps a liquid one would work. In any case be certain they are gluten-free. For the magnesium I myself prefer a powdered one, because it makes it easy to simply mix into my food - no need to make up a special drink, or depend on my digestive system to break down a solid pill (which I know it can't).

I'm sure others will have plenty of good suggestions for you to look into/try.

I hope you get all the help you need!

[ravenwoodglass]

PS: His last blood test (taken at 8 weeks) still showed high levels of antibodies. His endoscope showed complete atrophy of his intestine.

I am so sorry he is going through this. My DD had the same sort of pain and it is brutal.

Have you checked for nonfood sources of gluten? His soaps, shampoos, art and craft supplies, are you doing any remodeling? Drywall and it's dust or dust from wallpaper removal and pasting can do it. Is he consuming a lot of mainstream processed foods? Some have a risk of CC.

Have you removed dairy from his diet? If his villi are still damaged he would not be able to digest it yet. Remove it and let him try to add it in again in a few months.

I hope he gets some relief soon.

[confused]

I am so sorry he is going through this. My DD had the same sort of pain and it is brutal.

Have you checked for nonfood sources of gluten? His soaps, shampoos, art and craft supplies, are you doing any remodeling? Drywall and it's dust or dust from wallpaper removal and pasting can do it. Is he consuming a lot of mainstream processed foods? Some have a risk of CC.

Have you removed dairy from his diet? If his villi are still damaged he would not be able to digest it yet. Remove it and let him try to add it in again in a few months.

I hope he gets some relief soon.

How old is your son. My sons celiac came back negative, but only positive for high IgG levels, and he is still in pain also. I only have him gluten light tho right now cause we are still waiitng to get him into the ped gastro. But the family doctor here thinks he is just faking it.

I am so sorry for ur son.

paula

[acod]

Thanks for the responses. THis is great.

After reading them, I felt as if some more information may help out with questions you all might have. My son is 12. He is lactose and casien free. He was tested and is homozygotic for the DQ2 allele. From some of the research we have read, persons with this makeup often heal more slowly. We do not eat processed food, nor do we got out. Our son can't really sit up for very long due to his extreme discomfort. There is some suspicion of chrons, which we are working on getting a more confident diagnosis. All in all, the tests are somewhat helpful for diagnosis, not just treatment. We are thinking about going on the SCD diet.

Thanks again and we look forward to more of your suggestions and experiences.

It helps to have more folks to talk too.

Acod

[confused]

Thanks for the responses. THis is great.

After reading them, I felt as if some more information may help out with questions you all might have. My son is 12. He is lactose and casien free. He was tested and is homozygotic for the DQ2 allele. From some of the research we have read, persons with this makeup often heal more slowly. We do not eat processed food, nor do we got out. Our son can't really sit up for very long due to his extreme discomfort. There is some suspicion of chrons, which we are working on getting a more confident diagnosis. All in all, the tests are somewhat helpful for diagnosis, not just treatment. We are thinking about going on the SCD diet.

Thanks again and we look forward to more of your suggestions and experiences.

It helps to have more folks to talk too.

Acod

My son is 13, and the pain u are talking about sounds so much like his pain. How does your son do in school, my son only wnet 7 times in 1.5 month period. He has been going now for over an week, cause he wants to wrestle so he fights threw the pain. But his pain is sitll there and strong.

I want to start him on a gluten free diet so bad, but until we go to the ped dr, tehy said we cant. What are your sons other symptoms, i would love to hear, cause i still suspect my son might have celiac or crohns.

paula

[acod]

My son is 13, and the pain u are talking about sounds so much like his pain. How does your son do in school, my son only wnet 7 times in 1.5 month period. He has been going now for over an week, cause he wants to wrestle so he fights threw the pain. But his pain is sitll there and strong.

I want to start him on a gluten free diet so bad, but until we go to the ped dr, tehy said we cant. What are your sons other symptoms, i would love to hear, cause i still suspect my son might have celiac or crohns.

paula

HI Paula

My son has been out of school since October 20. For months he was unable to sit up and he screamed all day long. This is really crazy. His initial symptom was severe diarrhea for 3 days which then led to constipation. Initially we thought he had a virus, and then his stomach (intestinal) ache just continued to get worse and worse. It was through our persistance, and his not responding to meds, or clean CT (appendix) scans that led to us getting the Celiac blood work done. After the biopsy on Nov. 30, we went gluten free. He has had lots of other secondary symptoms. His BM's are infrequent, once to twice a week; clay colored, fatty and floating; he has neuropathies (tingling and burning sensations) along his arms, shoulders, legs and feet; he gets rashes on his face and lots of sores in his mouth, and he has become extremely irritable and depressed (which I can relate too completely). We have a homebound tutor that brings work, but my son has a hard time staying focused. He is very bright and the work is not at all stimulating, especially done in isolation. He wants to get his pain level down so he can go back to school and so he can sleep. He has not rested well for months. I can say that his BM's are starting to get to be a better color, but everything else continues.

Hope you get help soon. It is best that your son be ingesting gluten before your he has the blood work and a biopsy. Best of luck to you and your son. This definitely takes a toll on the entire family.

[RiceGuy]

...lots of sores in his mouth...

I don't recall seeing any references to that in direct relation to Celiac, but perhaps others have. It certainly reminds me of a candida infection though. It might be a secondary symptom, as the digestive system may not be able to keep the yeasties in check. I'd look into this too, and AFAIK it can't hurt to take a caprylic acid supplement just in case (it helped me quite a bit long before I knew about gluten).

[mdzplus2]

Has your son improved at all yet? I sent you a message. Still sorting out how to use the board. My son has many similar issues and is 14. He hasn't been to school since January. It's a very stressful time. I'm now considering the Specific Carbohydrate Diet, antibiotics, and have scheduled another endoscopy. He was diagnosed in July 2006 and has been gluten-free ever since. He was also diagnosed with GERD and esophagitis and just last month asthma. I don't know how I would hold up under the stress he must be feeling.

[gfpaperdoll]

I am sorry your son is going thru this, definitely check out the SCD diet. I would also not give him any of the gluten-free pastas, crackers etc. No grains except maybe white rice - which you wash before cooking, & corn meal & corn flour if he can tolerate it. But before I tried that I would put him on a soft food diet, like boiled chicken with carrots & cabbage, applesauce, bananas & not much else until the pain stopped. Basically this would be an elimination diet. Please let him know that this will not last forever but due to the damage of his insides that he needs to give his body a chance to heal.

During WWII when they thought only babies had celiac & that they outgrew it, they would put them on the rice & bananas diet

Also, definitely no dairy & I would eliminate soy also.

Maybe 100% grape juice diluted with water for a taste treat, definitely no sodas, coffee or tea.

for instance no bacon because it is not easy to digest & it is not a "soft food".

If he does well on the above for a couple of days you could add a couple of other soft foods like baked sweet potatoes.

hang in there, it gets better

[gfpaperdoll]

Tutor - if the tutor is not gluten-free tutor is cross contaminating your son by touching his papers & then giving them back to him & he touches the papers & then touches his food. that is enough to keep him screaming in pain. Not counting that tutor is probably also eating gluten in the car & has the crumbs all over one's person & not counting that tutor grades papers at home or school while eating cookies etc.

Your son needs to wash his hands before touching his food. I would also scrub his room & everything he touches - although you cannot do this all the time obviously - it would be good to do it once.

If you have to have a tutor, (I personally would postpone this) the tutor needs to be aware how serious this is - ie explain how it is like the peanut allergy - most people "get" that. Tutor needs to wash hands upon entering house & should not be giving any papers back to your son.

Also, be aware of the library book problem & school books etc that are not new.

same thing double for his friends - at this time - again explain that things change, just because he has to be ultra careful now does not mean that he always will have to be that way...

I would also put a hepa air filter in son's room...

[acod]

Hi all

Thanks for all of the suggestions. our son is slowly, progressing in a positive way. We have softened his diet and we was all of the time. We are also working on healthy mind activities as way to distract him during this very difficult time. We notice that he is more mobile and happier more times in the day, but he still clutches a pillow and can't sit up for long, because of his stomach. As the cosmos would have it, his Tutor is gluten intolerant, and is very conscience of his situation, which is a wonderful gift, and one less thing to think about....and I hadn't, so thanks for the idea. The same goes for the books he gets. That is really tricky and I am going to wipe them down now. Wow, this disease takes true detectives. Thankfully, this forum provides a great deal of wonderful sleuths.

Here's wishing you all good health, and thanks again for reaching out and sharing. We are hopeful that our son will be feeling stronger by summer! His doctor told us today that she thinks it will still be a few months, given his very high titer level and it's very slow retreat.

peace