Daughter diagnosed three months ago still suffering

[Mummu]

My 17 year old daughter was diagnosed in November.  She has been strictly gluten free other than an inadvertent contamination by some toast crumbs a few weeks ago at a friend's house.  We've seen the GI specialist for follow up a couple weeks ago, and the message was basically "it takes a while, be patient".  Well in the meantime I'm watching my kid being constantly nauseated, tired, and having little to no interest in eating.  She's lost weight and I'm worried she may becoming depressed.  She has the usual stress of being in her final year of high school and applying for post secondary, scholarships, etc.  She's also a competitive dancer.  Comp season is coming up and she has very little energy or interest, which is very unlike her.  It occurred to me last night that maybe stress is causing her to have stomach acid, which is making her nauseated, etc etc.  I'm considering just trying her on some Gaviscon or something for a few days.  She's also hypothyroid, so I'll have to watch when she takes her meds for that.

Does anyone have any other advice?  It's hard to be a Mom and watch your kid like this!

Thx,

Mel

[MisterSeth]

it will take 3 months from those crumbs, but if she's getting nauseous she might be eating something she can't handle with damaged villi. 

-lactose

-caffeine

if she doesn't have those it gets more complicated but from what i gather the most common 3 intolerances are

-salicylates like aspirin, foods with lots of spice or tartness have a lot too

-amines, more common in ripe foods, if you have allergies I think it makes this worse

-fermentable oligarchosaccharides or whatever they're called. starch makes you fart

 

also inversely she might not be eating enough starch if she gets nauseous. try making her eat baked potatoes or something

[cyclinglady]

I am so sorry that your daughter is ill.  My heart goes out to you.  I get it.  I have an 18 year who survived that final year in high school while being very active in extracurricular activities.  Wait, what am I saying?  I do not know how I survived it!  

While my daughter does not have celiac disease (tested twice), she has some different health issues.  It is hard not to be able to make them feel better.  

I can only offer up some advice as a celiac and a mom.  Be there (like you have been I am sure). Try to reduce her stress.  I did things like not making my daughter do a lot chores depending on her work load, providing  her with a good place to study, becoming the sleep police (so critical in healing), and providing nourishing meals and some gluten-free treats that I made and kept in the freezer (our house is gluten-free).  

Right now, there is no fast cure.  Anything she eats is going to hurt.  Gluten free or not.  Try feeding her soft, bland foods that are easy to digest.  Things like chicken, rice, stew, soups, etc.    Know that celiacs often have other food intolerances that need to be identified.  Keep a journal.    The most common is lactose because the ends of the villi that releases the enzymes to digest lactose are destroyed.  Once healed, she might get dairy back.  Then feed her ice cream.  Ice cream is my comfort food.  

Avoid eating out and avoid junk food (did I mention ice cream?).    Just look for certified gluten-free for now until she masters label reading.  

Make sure you have safe food practices in place at home.  Consider buying some toaster bags.  We use these when we travel and use a shared toaster.

Make sure she is taking her thyroid meds and that she is getting a thyroid panel periodically.   If I feel the need to nap, then  I know my thyroid is running hypo.  Often this occurs when I take a serious hit with gluten.  You just can not absorbs your meds well or it actives the immune system attacking  my thyroid too.  Consider a cheap pill weekly sorter.  Because when you have to take thyroid hormone replacement daily, the days run together.  “Did I take my thyroid med or was that yesterday?”  Missing doses can really mess you up.  You should find out if she has autoimmune thyroiditis too. It is strongly linked to Celiac Disease.  

Oddly, nausea can occur with thyroiditis too and it is not related to high acid, but low.  So be careful about taking an acid reducer.  Your GI should have biopsied her stomach for things like H.Pylori, etc.  he might have found an issue with her stomach.  If not, it is most likely celiac disease related.  Nausea can also happen when the stomach is simply not emptying due to a celiac or thyroid flare up.

Maybe she need to consider dropping dance.  I do know that while grades count for university admission until the end of the school year, some of the extracurricular activities do not.  But only you both know (and maybe school counselor advice) if this is detrimental or not.  She does need some fun time! 

Be patient.  Research.  It is your  best defense.  

Hugs to you.....you are a great Mum!  

 

 

 

 

Edited February 13, 2020 by cyclinglady

[GFinDC]

Hi,

Three months is not very long to recover from celiac damage.   It can easily take 6 months just to learn the gluten-free diet and things to avoid.  Our immune systems can take weeks to months to settle down after a glutening.   Her intestine won't heal completely until the immune attack subsides and stops.  Fatigue and GI discomfort/symptoms are both common problems for the newly gluten-free.

The fastest way to heal is to eliminate all gluten (wheat, rye and barley) plus oats and dairy.  Then stop all processed foods for several months at least.  Instead she should eat meats, veggies, eggs, nuts, and fruits.  Preferably all cooked at home and not in restaurants.

Pepto Bismol may help her gut symptoms.  Peppermint tea can help get gas out of the stomach.

There are dairy alternatives like almond milk and cashew milk available.  Soy milk is not a good choice.  There are also coconut ice creams available.  But she will probably be better off avoiding most sweet foods for now.

She can could take some boron, selenium, and calcium to replace missing minerals.  Damaged guts don't absorb as well so it can take time to build up levels.  People are often low on Vitamin D and B vitamins also.  Her doctor should have done a test for vitamin and mineral levels by now.

Edited February 13, 2020 by GFinDC

[Ennis-TX]

It can take me months to get over a exposure, I do best on a keto diet personally, as I have glucose issues and it had other effects on my other digestive conditions it. Many find that carbs, starches, sugars cause gas and bloating and that spices, and fibrous foods can be too harsh on a damaged intestines on top of the common intolerance issues mentioned by the others. >.< I pretty much stick to very tender meats, eggs, bacon, and drink plenty of bone broth and sometimes have a SMOOTH seed or nut butter with no sugar when feeling off.

[Mummu]

Thank you all for the replies.  I will talk to her about avoiding dairy as well.  Being a teenager I'm sure that will go over well!! :/

[Meg369]

On 2/13/2020 at 8:46 PM, Mummu said:

My 17 year old daughter was diagnosed in November.  She has been strictly gluten free other than an inadvertent contamination by some toast crumbs a few weeks ago at a friend's house.  We've seen the GI specialist for follow up a couple weeks ago, and the message was basically "it takes a while, be patient".  Well in the meantime I'm watching my kid being constantly nauseated, tired, and having little to no interest in eating.  She's lost weight and I'm worried she may becoming depressed.  She has the usual stress of being in her final year of high school and applying for post secondary, scholarships, etc.  She's also a competitive dancer.  Comp season is coming up and she has very little energy or interest, which is very unlike her.  It occurred to me last night that maybe stress is causing her to have stomach acid, which is making her nauseated, etc etc.  I'm considering just trying her on some Gaviscon or something for a few days.  She's also hypothyroid, so I'll have to watch when she takes her meds for that.

Does anyone have any other advice?  It's hard to be a Mom and watch your kid like this!

Thx,

Mel

Hi Mel

I got diagnosed as Celiac 13 years ago when I was 19 years old and in college. I can confirm for you that unfortunately it does take an incredible amount of time for the intestines to heal and the body to get back in balance. I'm sure its terrible to watch your child suffer and not be herself but it does get better with time, a lot of time. One think worth double checking is if all of her medications are gluten free. If she was diagnosed in November than its only been about three months, if you think about the amount of damage done over the 17 years before she was diagnosed, three months really isn't very long. To put it in perspective, I have been very strictly gluten free for 13 years with a few incidents of cross contamination. The last time I inadvertently ate gluten it took about 9 months for my body to completely recover. Something many people don't think about or realize is that the intestines actually regulate most of the hormones in the body (not the brain) so when the intestines become inflamed, as in the case of celiac, not only is it next to impossible to absorb nutrition from food, but all of the hormones in the body get thrown out of balance too. With nutritional mal-absorbtion comes malnutrition of various kinds (I always get severely iron deficient for example) each and every vitamin and mineral deficiency comes with its own unique and unpleasant  set of symptoms and side effects. I know it's difficult but being patient is the best course of action along with helping your daughter to be very strict with her gluten free diet. Some other tips are to have her regularly tested for mineral and vitamin deficiencies. Make sure that all of her friends and their parents are well educated on celiac so that they take it seriously and help to support her. I hope she starts to feel better soon!

Best,

Meg

[aiellokrista]

On 2/13/2020 at 2:46 PM, Mummu said:

My 17 year old daughter was diagnosed in November.  She has been strictly gluten free other than an inadvertent contamination by some toast crumbs a few weeks ago at a friend's house.  We've seen the GI specialist for follow up a couple weeks ago, and the message was basically "it takes a while, be patient".  Well in the meantime I'm watching my kid being constantly nauseated, tired, and having little to no interest in eating.  She's lost weight and I'm worried she may becoming depressed.  She has the usual stress of being in her final year of high school and applying for post secondary, scholarships, etc.  She's also a competitive dancer.  Comp season is coming up and she has very little energy or interest, which is very unlike her.  It occurred to me last night that maybe stress is causing her to have stomach acid, which is making her nauseated, etc etc.  I'm considering just trying her on some Gaviscon or something for a few days.  She's also hypothyroid, so I'll have to watch when she takes her meds for that.

Does anyone have any other advice?  It's hard to be a Mom and watch your kid like this!

Thx,

Mel

Is she taking any medication?  Believe it or not, there are meds, including vitamins, that contain gluten. If you’re interested, look up glutenfreedrugs.com. It also includes cold medicines, etc. I hope she feels better. However, I’m surprised that it’s taking such a long time. I would’ve thought that she would be feeling better by now, otherwise. 

[M. Martha]

Check out Isabella Wentz, the thyroid pharmacist, who was in her 20’s when she was diagnosed with Hashimoto’s thyroiditis. She may be able to provide a roadmap for addressing your daughter’s issues. She wrote Hashimoto’s Protocol as well as other books. My symptoms were similar to your daughter’s, but I have been able to reverse them. It’s taken time, research, and a multi-pronged approach. I had SIBO in addition to celiac which caused a leaky gut, I also had a problem with casein in milk, muscle pain from nightshades and sugar, and low grade acid which caused nausea. I lost weight. At one point I was low in vitamin D and folate. I had no energy or motivation. I would be happy to share more with you if you would like to email me. I’m so sorry you and your daughter are going through this. Know there is a light at the end of the tunnel - health and energy is within reach. Be blessed, Martha 

[knitty kitty]

 Mummu said her daughter was "constantly nauseated, tired, and having little to no interest in eating.  She's lost weight and I'm worried she may be becoming depressed"

 

I agree with M.Martha.  The Autoimmune diet without dairy and nightshades really helped me.

Also, I had a thiamine deficiency.  Once I started the Lipothiamine and regular thiamine supplements (like Dr Wentz suggested in M.Martha's post), I noticed a drastic difference within hours.  

Thiamine is a water soluble B vitamin.  Any excess is excreted by the kidneys.  I doubted a higher dose of thiamine would do much more than make expensive urine, but I was amazed at the improvements.  

Hope this helps!