Please help! Daughter not getting better.

[sweetpeahomer]

I have been following these forums since my daughter's diagnoses nearly five months ago but have never posted before.  I'm praying that someone in here can help me!

My daughter was diagnosed 5 months ago.  Her ttg IGA was greater than 100 and Celiac was confirmed with a biopsy.  Although this was hard news we were also hopeful as she had been sick for over a year with no answers.  We were told go gluten free and she should start feeling better within two weeks or so (wishful thinking, I know).  No other advice or info.  I by nature am a researcher.  I need all info so I took it upon myself to find out all I could and ensure that we were truly gluten free.  Our home was scoured, all gluten was removed and here we are she is still just as sick.  She's had maybe a handful of good days in the last several months.  I called her doctor who's only answer was that she must be cheating.  Let me tell you guys she most definitely isn't cheating!  She can't stand being this sick and is starting to get depressed because of it.  I went back to the doctor last month and his answer was she just needs to get over it.  Even if she's sick she needs to get up and go to school and deal with it.  I have never been so upset in my life!  This daughter of mine has missed so much school but there are so many days where she has gone and stuck it out even though she had to run out of class to throw up.  Don't tell her she just had to deal with it.  Unfortunately this is the only in network doctor in my area so no chance of switching.  He also put her on a low dose of Amitriptyline to help with the pain which he thinks is somehow in her mind?  I pulled her off the Amitriptyline after she began getting itchy all over.  I haven't called the doctor back because I'm still so upset. Basically I'm at my wit's end!  I can't sit and watch my daughter suffer but don't know what else to do?! Any advice?  Anyone who's been here? I feel so alone in this.

 

[tessa25]

You can put her on a simple, bland diet for a month to see if she starts to feel any better. Try bland homemade soups and stews.

[Ennis-TX]

It took me months to start feeling better, almost a year to have energy back, over 4 years to start putting on muscle mass. She can have the blood test redone and see if what her antibodies are and if they are going down. This should give a perspective of where she is. A follow up biopsy can give comparison on healing internally. This will help you a lot and ease your worry.  If you do suspect gluten in the diet they have stool test also to see if any has been eaten recently but do know in some it can take over 6weeks from a tiny amount for the actual antibodies go down.

You probably already checked but shampoo, soaps, lotions, playdough, makeup etc. can all have gluten and lead to it getting on hands then into food.

Other food issues are VERY common, Diary is a huge one as with damaged vili we can not break it down. Some develop other issues, heck see my current list in my signature...bunch of foods instantly have me vomiting. I am recently stuck trying to find out new ones.
Start a bland diet with only a few foods, rotate those out and onto a few others. Go with bland, managed meals, IE cooking them foil lines pans like baked meat, eggs, sheet pan veggies, nothing rough, and cooked super soft. Keep a food diary, I have heard of people having issues with dairy, peanuts, soy, eggs, nuts, legume, nightshades, meats, heck iceberg lettuce has me vomiting.  Keep a food diary and find what works for her.
https://www.wikihow.com/Keep-a-Food-Diary
https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life

[ccrew99]

When I found out I had celiac I also got diagnosed with POTS and gastoparesis around the same time. I’m not sure which one started what but that’s what I got stuck with.  If you have had celiac for a long time without knowing it can lead to a cascade of other heath issues.  One point I need to make is that the gastroparesis actually causes the stomach muscles to paralyze or work less than they should which causes delayed gastric emptying. This caused chronic 24-7 nausea for years along with occasional/frequent vomiting. It’s miserable. So keep researching and talking with others here on the forum to see if anything matches up. There are a lot of good info and informative people on the site. 

[sweetpeahomer]

Thank you guys for your responses.  She did have one other antibody test a couple of months after her diagnosisit and at that her ttg IGA level was 160.  They were preformed by two different labs so the first one stopped counting at 100 and just said her number was  greater than 100.  The second lab continued counting so I actually have no idea if there was even a little improvement.  

I will start a diary with her try to limit the foods so we can get an idea if maybe there's another for that's bothering her.

[cyclinglady]

Just a few months into the diet is such a short amount of time to really expect healing.    In theory, the small intestine can heal within weeks.  But in reality, it takes much longer due to the steep learning curve of the gluten free diet and other possible concurrent illnesses.  

The other members have provided excellent advice.  I too, would look to her diet first.   Although your kitchen may be clean from gluten, look for other sources like pet food, construction in the house (plaster, drywall)  or eating out.  Know that gluten exposures will set her back.  Unlike an allergy which is usually swift and resolves fast, the antibodies related to celiac disease can ramp up slowly and take months or years to come down.  It is why a strict diet is critical.  

I read in the Gluten Freedom by Dr. Fasano that one of his teen patients was not doing well.  His parents were perplexed.  In a private conversation, Dr. Fasano discovered that the teen was dating and did not want to make a fuss and he was consuming pizza.  I am not implying that this is occurring with your child, but anything is possible with a teen (got one myself!)

Consider the Fasano diet for a month or so.  It was developed when many celiacs were not responding to the gluten free diet and were being diagnosed incorrectly as having refractory celiac disease.  Turns out they were getting trace gluten into their diets despite their best efforts.  Some GI experts (e.g. Dr. Crowe head of the GI Association) suggest that eating too many gluten-free processed foods increases the overall daily amount that could trigger a flare up.  

https://www.gastrojournal.org/article/S0016-5085(14)00553-8/pdf

The reality is the US set the standard at 20 ppm, but that might be too much for some celiacs.  Who knows where your daughter is on the spectrum?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3598839/

Intolerances are common.  Know that some resolve with healing and others may not.  The food journal is a great idea! 

Keep advocating.  Keep researching and you will figure it out.  I wish you and your family well.  She is a lucky girl to have such a supportive parent!  

 

[sweetpeahomer]

Thank you for your advice. I will look into the Fasano Diet and continue advocating for her.

[pikakegirl]

I believe you have a gluten free home. I do too and have not eaten out on my 11 years post diagnosis. It took 6 months for my blood IgA and CRP/Westergreen levels to go to normal. They have been normal for 10.5 years. That said it took years for my GI to be normal. Healing can be slow or fast. Seems each person is different. Like you I had no follow up care offered so I read books and scoured the internet for support advice. Getting a detailed vitamin panel is key to know how to supplement for healing. I had issues with D3, K2, Folic Acid metabolization (I need lmethyfolate instead), B12 etc. My stomach was damaged by bad advice from doctors. I found I suddenly developed food intolerances and had to go in an elimination diet. Once I got down to 10 foods my stomach and GI calmed down. I drank fresh shredded ginger tea with every meal for years. After 7 years I was able to tolerate added foods which I tried one at a time. Again I am 50 so being diagnosed in my 30s I heal much slower. I hope this helps and time is healing.

[cyclinglady]

Oats.  Be safe.  Go back to the old celiac disease advice of not including oats for six months.  Once you see improvement, you can test them.  Some celiacs do not tolerate oats, even certified gluten-free/purity grown oats.  

[Sienna2013]

It can take a looongggg time to feel better. We have two celiacs in our household; both were off the charts at diagnosis, and now 18+ months later, are still well above normal (but now only by 2x or so), and both are feeling better but not awesome. Keep the faith, and keep to as clean a diet as possible. 

BTW, look into celiac camp and sign her up if there's one that works for you logistically. It's a great chance for kids to hang out and be kids together, without having to worry about what they can/can't eat. 

[SKULLSANDUNICORNS]

I had the same problem and you are right, it is it not the gluten. Gluten can do a lot of damage to your intestines and when you stop eating it, you can start to see other problems. Leaky Gut Syndrome is common among Celiacs and if you have a bad case of it, food particles slip into your bloodstream every time you eat and make you sick. Mine manifests as fever, kidney pain, weakness and I feel horrible. Moody, angry, craving sugar and many of the feelings that wheat brings on.

I got tested for IGE food intolerances and I was intolerant to pretty much every thing I eat. The doctor said there is no use in further testing because you will be intolerant to pretty much everything until you heal you gut. I got a great but slow improvement by following the GAPS diet. I eat mostly chicken, chicken bone broth, vegetables, kombucha and a little sweet potato and fruit. I take L Glutamine, Slippery Elm Bark, Tumeric, Ginger, Probiotics, Organic digestive tea blends, lots of water, apple cider vinegar water, garlic, mint, fennel, larch arabinogalactan (tree bark). These are the all the things I found in research that were the most recommended. Leaky gut is not easily or quickly cured but it can be done. I have read 6 weeks to 18 months. I have been 6 weeks doing all the right things and only started to feel better after week 5, which is also when I cut out most fruit and sugar heavy vegetables. Sugar is the worst thing for a leaky gut, it feeds the bad bacteria.

It seems most Celiac is not alone, it brings other food problems with it the longer you eat wheat. I am in terrible shape. I did find out by accident that taking Benadryl before meals drastically reduces my symptoms. Food particles leak into my bloodstream so taking Benadryl reduces symptoms greatly because it calms the auto immune response from the food particles.

Once you repair your leaky gut, foods can be added back in gradually to see what you can tolerate. I would bet the farm your daughter has additional food intolerances making her sick. I eat no GMOs, all whole food and all organic. I quit diet cokes and cut out sugar 100% because sugar is bad for gut health and Celiac problems are in the gut. Processed foods and sugar must go to stay healthy in life. I used to think how horrible that would be but now I think how I am willing to do anything I have to do to feel good. I don't miss my favorite foods I will probably never have again because I associate them with feeling sick.

I think some of the most common things Celiacs can;t have are other grains, even gluten free grains. I cannot have any of them, I tested intolerant to all of them. Eggs and dairy are also intolerances that celiacs often have. It is not an allergic reaction, it is that they make you sick in one way or another. My daughter also has celiacs and she can't have dairy, eggs, beef, rice and oatmeal. My Son has Celiacs and he can't tolerate oatmeal or rice.

So there is my advice, there are probably more food issues. I hope you all figure it out soon! I know it is hard to live life like this.

 

[Flash1970]

Hi, I was diagnosed with celiac disease 7 years ago. I didn't have a lot of stomach problems, but had chronic bad anemia. When I stopped eating  gluten, I felt so bad I thought something else was wrong. I kept calling my Dr and he said to keep on the diet and I'd feel better in a few months. Well it took at least 4 months before I felt better. I still didn't feel really good. Then I read the wheat belly diet book. I cut out any processed gluten free foods. That helped. A lot. What really made the difference was when I cut out rice, corn, and oatmeal. It makes it really hard to eat anything, since everything uses rice flour or rice syrup or oatmeal.  You really have to check labels. I make all my own food. I make my own fruit leather, biscuits, etc. I do my own canning and don't use extra sugar. 

Sometimes the aip diet is a good place to start. Takes out all allergens and then you add them back slowly and see if you have a reaction.

Just remember there's nothing fast about celiac disease. Everything takes a long time to heal. Even if people tell you that they've healed in 2 weeks, it doesn't mean that your body will.

I eat mostly Paleo diet. I feel like it's the cleanest. I do add other foods that I like and that don't harm my body. Like potatoes and cheese. You just have to individualize your diet to fit your life style.