Calling Dr. Hive!

[Melanie32]

Hi y’all! I don’t post much but have been lurking here for two decades. I so enjoy reading the CHAT forum posts every morning. 😊

My daughter has been having some strange health issues and I’d love any input or shared experiences that you guys can offer.

She is 22 and about 6 months ago suddenly seemed to develop a problem digesting wheat products. She refused to continue eating them so she could get an accurate celiacs test as it caused her so much pain. She experienced immediate relief when she quit wheat products. She accidentally exposed herself to wheat on a few more occasions and was in terrible pain for hours afterwards. 
 

A few weeks later she started to experience symptoms again, though they were less severe. We researched and discovered that oats are often cross contaminated so she cut out all oat milk and oat products and felt better within days. Even certified gluten free oat products made her ill. 
 

Then she was fine for several months. No health issues whatsoever. About 3 months later, she noticed that she was pulling muscles really easily. Then it progressed to her being really sore for days after more strenuous activity, like house cleaning for a couple of hours. It wasn’t unbearable at all, just uncomfortable and strange. 
 

At this point I made her an appt just to get her vitamin levels checked as I thought maybe she had a vitamin deficiency which I read could be common if she did have celiacs. 
 

Her bloodwork came back fine. Meanwhile, her condition worsened considerably. To the point that she couldn’t do simple things and just doing her college assignments would put her in a lot of pain; on a heating pad and having to rest completely. Her muscles all became very tight and all of her joints began to pop like crazy doing the simplest of movements. 
 

During this time, she also began experiencing some numbness and tingling in her extremities after taking a short walk or driving for 30 min. 
 

She was at the point where it hurt to even wash her hair! It’s been so hard to watch her go through this. She is an artist and hasn’t been able to paint or draw, she can no longer do her yoga or workout. She is able to walk about a mile. It hurts a bit but if she keeps the activity mild and short, the pain will go away once she can rest. 
 

She can’t go shopping much at all, but is limited to a couple stints of about 30 min each with a break in between. 
 

Her newest symptom is hot flashes, pretty bad ones-they rival my perimenopausal hot flashes. 
 

She has seen her GP twice and a really bad rheumatologist once and had lots of bloodwork that all keeps coming back fine. We didn’t return to the last rheumatologist for the follow up appt as he was awful! She is seeing a new rheumatologist tomorrow.

 

I apologize for the short book I’ve written here. If anyone has taken the time to slog through all that, I thank you from the bottom of my heart!💜 

If you have any insight or similiar experiences I would love to hear from you! This has been going on at this level for two months now and we are getting desperate for some answers!

 

Oh and she has had her thyroid tested and been tested for lupus, rheumatoid arthritis and Lyme disease to name a few. She has had back X-rays and knee X-rays. They can see the muscle spasms on her x rays but everything else looks fine. She was a perfectly normal and active young adult before all of this started. She did yoga, worked out and went on daily long walks. She also eats fairly healthy and is a healthy weight. 

[Katy]

Pernicious anemia has symptoms like that, it’s something to do with B12. It looks normal on a blood test so it’s hard to diagnose. 

[Katy]

When you see the rheumatologist, don’t say you heard pernicious anemia from the internet. Tell them your friend Katy, who’s a nurse, told you to have them rule that out because it took my friend with similar symptoms 15 years to get that diagnosis and finally feel better. 

[KSera]

Is it possible she is still getting glutened? Cross contamination maybe? Celiac disease can cause joint pain like that. 

[Melanie32]

8 minutes ago, Katy said:

When you see the rheumatologist, don’t say you heard pernicious anemia from the internet. Tell them your friend Katy, who’s a nurse, told you to have them rule that out because it took my friend with similar symptoms 15 years to get that diagnosis and finally feel better. 

Thank you so much for taking the time to respond and share this info! Her b12 level was actually too high and the dr said it was because of the supplement I was giving her and to take her off of it. That was her GP. I had started her on vitamin d, b 12 and a low dose of iron as I’d read that those were the most common vitamin deficiencies for celiac patients. 
 

Could these blood results be possible with pernicious anemia?

[Melanie32]

10 minutes ago, KSera said:

Is it possible she is still getting glutened? Cross contamination maybe? Celiac disease can cause joint pain like that. 

Thanks So much for taking the time to respond! I’ve wondered that but felt like it would show up in gastro symptoms as well since those were her symptoms with wheat. The only possible place for cross contamination would be pots and pans and utensils as our house is now almost completely gluten free and I never prepare anything with wheat products at our house but I didn’t dispose of old pans and utensils. We eat mostly at home. 
 

Do you think that could still be the issue?

[Katy]

26 minutes ago, Melanie32 said:

Thank you so much for taking the time to respond and share this info! Her b12 level was actually too high and the dr said it was because of the supplement I was giving her and to take her off of it. That was her GP. I had started her on vitamin d, b 12 and a low dose of iron as I’d read that those were the most common vitamin deficiencies for celiac patients. 
 

Could these blood results be possible with pernicious anemia?

Yes. 

Quote

Your vitamin B12 level. A low level of vitamin B12 in the blood indicates pernicious anemia. However, a falsely normal or high value of vitamin B12 in the blood may occur if antibodies interfere with the test.

https://www.hoacny.com/patient-resources/blood-disorders/what-pernicious-anemia/other-names-pernicious-anemia/how

 

[Melanie32]

Just now, Katy said:

Yes. 

https://www.hoacny.com/patient-resources/blood-disorders/what-pernicious-anemia/other-names-pernicious-anemia/how

 

Thank you! I will definitely mention this to her dr! And I will bring it up in the manner you advised. I’ve noticed doctors don’t like it when we mention looking things up online!🙃 

[KSera]

25 minutes ago, Melanie32 said:

Do you think that could still be the issue?

I don’t know honestly. We have one that celiac has been a rule out diagnosis for, but have never actually dealt with celiac, so I don’t know how cross-contamination symptoms tend to show up. It could be that the joint pain stuff is entirely unrelated to the celiac stuff, in which case there are a number of potential causes that might not show up in rheumatology. Did she have any viral illnesses in the several months before joint pains started? 

[Katy]

A more reputable source, but more difficult to understand: https://www.nejm.org/doi/full/10.1056/NEJMc1201655

[Melanie32]

5 hours ago, KSera said:

I don’t know honestly. We have one that celiac has been a rule out diagnosis for, but have never actually dealt with celiac, so I don’t know how cross-contamination symptoms tend to show up. It could be that the joint pain stuff is entirely unrelated to the celiac stuff, in which case there are a number of potential causes that might not show up in rheumatology. Did she have any viral illnesses in the several months before joint pains started? 

None that we know of. I’ve wondered about long COVID as I’ve heard of people having Covid with weird symptoms and not knowing it was Covid. I honestly can’t remember the last time she was sick. It’s been quite a while, probably over a year.

 

Thanks again for taking the time to respond! I really appreciate it. 💜

[Melanie32]

6 hours ago, Katy said:

A more reputable source, but more difficult to understand: https://www.nejm.org/doi/full/10.1056/NEJMc1201655

Thank you so much! I need all the information I can get! 💜

[KidsHappen]

I agree with Katy, sounds like a B12 issue. It could also be that she had previously had low B12 that caused damage and now her levels are normal but she has residual damage.

[Melanie32]

3 hours ago, KidsHappen said:

I agree with Katy, sounds like a B12 issue. It could also be that she had previously had low B12 that caused damage and now her levels are normal but she has residual damage.

Thanks so much for taking the time to respond! I really appreciate your input! 💙

[Melanie32]

So my daughter had some more blood tests run and here are the results. Thought I’d see if anyone here had any insight. She sees her rheumatologist again on Friday to discuss the results but now I’m wondering if I need to make an appt with an endocrinologist instead. I’ve researched a bit and am aware that it could mean autoimmune issues with her thyroid. Hoping someone here might have some experience that could be helpful in figuring out our next steps.

Before these results the dr was leaning towards fibromyalgia but wanted to rule out any other possibilities first. 

Thanks again y’all! 

Edited May 18 by Melanie32

[Terabith]

Can't see the results?

[Melanie32]

1 minute ago, Terabith said:

Can't see the results?

lol! I forgot to post the results! They are up now. 

[Pawz4me]

41 minutes ago, Melanie32 said:

So my daughter had some more blood tests run and here are the results. Thought I’d see if anyone here had any insight. She sees her rheumatologist again on Friday to discuss the results but now I’m wondering if I need to make an appt with an endocrinologist instead. I’ve researched a bit and am aware that it could mean autoimmune issues with her thyroid. Hoping someone here might have some experience that could be helpful in figuring out our next steps.

Before these results the dr was leaning towards fibromyalgia but wanted to rule out any other possibilities first. 

Thanks again y’all! 

I think that would definitely indicate some type of AI thyroid disease, most likely Hashi's.

Endocrinologist are usually the main providers who treat that, but my understanding is that some rheumatologist will treat it since it's an AI disease. Unless you have a specific endo in mind that you could go ahead and call and get the ball rolling on an appointment then I'd lean toward keeping the appointment with the rheumy and getting them to refer to an endo. She may get seen quicker that way.

Edited May 18 by Pawz4me

[KSera]

29 minutes ago, Pawz4me said:

I'd lean toward keeping the appointment with the rheumy and getting them to refer to an endo. She may get seen quicker that way.

Yes, especially since rheumatologists can be extremely difficult to get into right now! Since she already has an appointment, I’d keep it.

 

[Melanie32]

Thanks so much ya’ll! 💙

Anyone have any experience with Hashimoto's?

[Pawz4me]

17 minutes ago, Melanie32 said:

Thanks so much ya’ll! 💙

Anyone have any experience with Hashimoto's?

There are several members here who have it. I do, but my thyroid was pretty much fried by the time I was diagnosed (my own fault for ignoring symptoms for so many years). Getting an appropriate dosage of levothyroxine has pretty much taken care of it, but in hindsight based on symptoms I experienced I know I had my first thyroid attack in my early 20's and that my numbers probably fluctuated wildly at times for many years.

Do be aware that having one AI disease means a person is at greater risk of getting another one. The saying is that they like to run in packs. A few years after I was diagnosed with Hashi's I was diagnosed with RA. Those two are common co-diagnoses. But hopefully if she has to deal with anything else it'll be far down the road.

[KSera]

I have one with thyroid disorder which seems likely hashimoto’s, but the doctor doesn’t see a reason for nailing down whether it’s that or something else causing the thyroid disorder. Whatever the case, when their thyroid is not properly treated, the symptoms are pretty bad. They have other health stuff as well though. 

[Melanie32]

So we had another Dr appt yesterday. Dr is now thinking possible Ehlers Danlos, POTS and of course, Hashimotos. 
 

She prescribed physical therapy for the ED and wants her to see a cardiologist for the POTS and an endocrinologist for the Hashi. She also mentioned possibly seeing a genetic counselor to formally diagnose the ED.

Anyone have any insight or tips for navigating any of this? It’s all new to me, though I have been researching like mad for the last 4 months. 
 

My daughter is doing much better now. She can do a simple 10 min yoga practice in the morning and walk 2 miles in the evening and can do other activities more easily and with less pain than before. Her lifestyle is still considerably modified to keep her from being in terrible pain. Everything still hurts but not nearly as bad and the pain will usually go away as long as she doesn’t overdo it and rests after each activity. 
 

Edited to add:

Her newest symptom is very reactive skin; she gets rashes from showering, from any rough surface brushing against her, from the sun, etc.

Edited May 25 by Melanie32

[Halftime Hope]

11 minutes ago, Melanie32 said:

So we had another Dr appt yesterday. Dr is now thinking possible Ehlers Danlos, POTS and of course, Hashimotos. 
 

She prescribed physical therapy for the ED and wants her to see a cardiologist for the POTS and an endocrinologist for the Hashi. She also mentioned possibly seeing a genetic counselor to formally diagnose the ED.

Anyone have any insight or tips for navigating any of this? It’s all new to me, though I have been researching like mad for the last 4 months. 
 

My daughter is doing much better now. She can do a simple 10 min yoga practice in the morning and walk 2 miles in the evening and can do other activities more easily and with less pain than before. Her lifestyle is still considerably modified to keep her from being in terrible pain. Everything still hurts but not nearly as bad and the pain will usually go away as long as she doesn’t overdo it and rests after each activity. 
 

Edited to add:

Her newest symptom is very reactive skin; she gets rashes from showering, from any rough surface brushing against her, from the sun, etc.

This sounds like my adult child's experience with Long Covid/Post-Vaccine issues (the timeline is all muddled together, so it's hard to tease the two apart in her case): POTS/nausea for months, chronic fatigue, suspected AI disease, small fiber neuropathy, hypermobility, finally settling into Celiac and MCAS, as well as suppressed immunity. (The fatigue has improved, as has the hypermobility and POTS.)

 

[KSera]

1 hour ago, Halftime Hope said:

This sounds like my adult child's experience with Long Covid/Post-Vaccine issues (the timeline is all muddled together, so it's hard to tease the two apart in her case): POTS/nausea for months, chronic fatigue, suspected AI disease, small fiber neuropathy, hypermobility, finally settling into Celiac and MCAS, as well as suppressed immunity. (The fatigue has improved, as has the hypermobility and POTS.)

 

Same. I was listening to a podcast this week that made me think of this thread. It might be useful. It’s an interview with a Dr who specializes in treating patients with POTS and other dysautonomia and many of these other issues come up (EDS, MCAS). 
After finishing her training in neurology at Mayo Clinic, Dr. Svetlana Blitshteyn started a Dysautonomia Clinic in 2009. Little did she know what was in store many years later when Covid hit!

eta: I also wanted to give you kudos on working so hard to find answers for your daughter. It breaks my heart how many young people who are dealing with similar issues right now have parents who brush them off and accuse them of laziness and refused to believe that there’s anything actually wrong. It leaves kids feeling like they’re just not important to their parents and it’s truly heartbreaking. Your daughter is lucky to have you working hard to figure out what’s making her feel so bad.
 

Edited May 25 by KSera

[Melanie32]

On 5/25/2024 at 9:14 AM, Halftime Hope said:

This sounds like my adult child's experience with Long Covid/Post-Vaccine issues (the timeline is all muddled together, so it's hard to tease the two apart in her case): POTS/nausea for months, chronic fatigue, suspected AI disease, small fiber neuropathy, hypermobility, finally settling into Celiac and MCAS, as well as suppressed immunity. (The fatigue has improved, as has the hypermobility and POTS.)

 

As far as I know, my daughter hasn’t had Covid since 2021. She did get the original Covid vaccine and booster before that but that’s it. She hasn’t been sick at all since then either. 
 

She’s always had weak knees and did dislocate her shoulder once as a child doing a normal activity that shouldn’t have caused a dislocation. It’s always hurt her knees to walk upstairs or uphill since she was little. Her dr said I’m probably hyper mobile as well after checking my wrist and knee flexibility.  I do have a lot of knee pain and am unable to do squats or high impact exercises. 
 

She’s also always been sensitive to the heat and has gotten rashes if she’s been in the sun too much or her sunscreen started to wear off. 
 

As far as the POTs goes, both her and I have always had lower blood pressure and we often get dizzy when we stand up too fast. She did pass out once a couple of years ago and has almost passed out 3 other times, once as a young child. I also passed out once after giving blood and had to be really careful when I was pregnant because I often felt like I was going to pass out. 
 

I’m really hoping and praying that the physical therapy will help as well as getting her thyroid straightened out. 
 

Thanks so much for your input! Praying all of our daughters can heal and get back to the normal young adult lives they should be living! 🙏🏻💗 I’m so glad to hear your daughter is improving!

[Melanie32]

On 5/25/2024 at 10:18 AM, KSera said:

Same. I was listening to a podcast this week that made me think of this thread. It might be useful. It’s an interview with a Dr who specializes in treating patients with POTS and other dysautonomia and many of these other issues come up (EDS, MCAS). 
After finishing her training in neurology at Mayo Clinic, Dr. Svetlana Blitshteyn started a Dysautonomia Clinic in 2009. Little did she know what was in store many years later when Covid hit!

eta: I also wanted to give you kudos on working so hard to find answers for your daughter. It breaks my heart how many young people who are dealing with similar issues right now have parents who brush them off and accuse them of laziness and refused to believe that there’s anything actually wrong. It leaves kids feeling like they’re just not important to their parents and it’s truly heartbreaking. Your daughter is lucky to have you working hard to figure out what’s making her feel so bad.
 

Thank you so much for sharing a bit about your experience and for the video! I am going to watch it today. And most of all, for your kind words. It sounds like your daughter is blessed to have you batting for her as well! I’ve read so many sad stories like this on Reddit and it is truly a sad thing how many young people have to go so long being told that it is all in their heads while suffering and missing out on so much at such a young age. It is heartbreaking. 

Praying for wholeness and healing for your child and for all of our momma’s hearts as we struggle to see our dear children suffering. 

[Halftime Hope]

On 5/25/2024 at 9:18 AM, KSera said:

Same. I was listening to a podcast this week that made me think of this thread. It might be useful. It’s an interview with a Dr who specializes in treating patients with POTS and other dysautonomia and many of these other issues come up (EDS, MCAS). 
After finishing her training in neurology at Mayo Clinic, Dr. Svetlana Blitshteyn started a Dysautonomia Clinic in 2009. Little did she know what was in store many years later when Covid hit!

Thank you KSera. I'll give this a listen. Dd and the pre-schooler also both have elevated Ig4 levels, and low IgA.

@Melanie32 The other thing that might play into all of this is MTHFR genetics.  I'm wondering if, in time, we'll find out that there is an association between MTHFR gene anomalies and susceptibility to PASC. (I'm very early into thinking this through, and have not done any reading on what others are researching on the topic.)

 

[J-rap]

Sounds like you're working hard to figure this out!  It does sound like it could be an autoimmune condition or something her body is lacking or unable to metabolize correctly, or some kind of syndrome such ED.  

We have various AI conditions on my side of the family...  I have Hashimoto's (strangely, only very mild symptoms when it was first discovered, mainly, losing more hair than usual, but otherwise completely symptom-free for 30 years); other family members have other AI conditions, all different.  Several family members without actual AI conditions seem to just have very sensitive systems that are thrown off or react to things easily.  (One of my dds broke out in a body rash in the hospital the day she was born! And several of my kids will get migraines or feel really "off" in the 24 hours before a big weather change.)  My dh's side of the family brings in a condition called hemochromatosis --  when your body can't metabolize iron so you get iron overload.  That can have interesting symptoms (which can also become very serious), and can throw off other things your body needs such as copper and zinc levels.

Anyway, no real answers here, just saying that it could be any number of little things or a mix of things that together can feel pretty miserable.  I hope you can figure this out soon and find some good solutions to help with the symptoms.  It's hard to see our children suffering so much at a young age!  😞 

[Melanie32]

On 5/26/2024 at 5:51 PM, Halftime Hope said:

@Melanie32 The other thing that might play into all of this is MTHFR genetics.  I'm wondering if, in time, we'll find out that there is an association between MTHFR gene anomalies and susceptibility to PASC. (I'm very early into thinking this through, and have not done any reading on what others are researching on the topic.)

 

I’ve read a bit about MTHFR genetics and will research a bit more. Thanks for mentioning this. 🙂

[Melanie32]

My daughter finally has 2 diagnoses: Hypermobility spectrum disorder with mast cell issues and dysautonomia as well as Hashimotos thyroid disease. We found an amazing dr who chose to specialize in hypermobility and Ehlers Danlos. He works with a physical therapist who is hypermobile herself and specializes in treating these issues as well.

 

She started physical therapy today and is going on a low histamine diet for the mast cell issues as well as taking selenium for her Hashimotos per her endocrinologist’s instructions. We have high hopes that she will start feeling better soon. 
 

Thanks again for all your help! If you have any input on these issues, I would love to hear it!

[KSera]

I’m liking because getting diagnosis is so helpful in being able to treat! How lucky to find a hypermobility specialist! I’ll be curious if the low histamine diet proves helpful. It’s one of the things that has been out of reach for my own kid.
 

[kbutton]

5 hours ago, KSera said:

I’m liking because getting diagnosis is so helpful in being able to treat! How lucky to find a hypermobility specialist! I’ll be curious if the low histamine diet proves helpful. It’s one of the things that has been out of reach for my own kid.
 

Just know that there is conflicting information among lists of low histamine, so it just a jumping off point—it’s more important to find her triggers. Also, after removing triggers and getting on stabilizing meds for MCAS, she might be able to add some foods back in or rotate through foods that are maybe only a problem when things are already off kilter.

For the muscle spasms, she might try magnesium.

[kbutton]

25 minutes ago, kbutton said:

Just know that there is conflicting information among lists of low histamine, so it just a jumping off point—it’s more important to find her triggers. Also, after removing triggers and getting on stabilizing meds for MCAS, she might be able to add some foods back in or rotate through foods that are maybe only a problem when things are already off kilter.

For the muscle spasms, she might try magnesium.

I meant to reply to the OP, lol! Sorry!

[Melanie32]

On 7/23/2024 at 9:47 PM, kbutton said:

Just know that there is conflicting information among lists of low histamine, so it just a jumping off point—it’s more important to find her triggers. Also, after removing triggers and getting on stabilizing meds for MCAS, she might be able to add some foods back in or rotate through foods that are maybe only a problem when things are already off kilter.

For the muscle spasms, she might try magnesium.

Thank you! Her dr just recommended she avoid processed meats, aged cheeses, fermented foods and leftovers that are more than a day or two old for now. We may try limiting more foods later. She isn’t on any meds for her MCAS issues right now. So far, she has tried several antihistamines. Claritin doesn’t help and all the others make her incredibly sleepy and give her bad brain fog once they build up in her system. The MCAS symptoms aren’t the main problem right now so we are focusing on physical therapy for the muscle weakness and pain. 
 

Her dr wants her to consider trying another antihistamine in the future but is starting with lifestyle changes for now. 
 

She has been taking a magnesium supplement for several months now. I have no idea if it helps! Do you have a certain one you recommend?

[kbutton]

4 hours ago, Melanie32 said:

She has been taking a magnesium supplement for several months now. I have no idea if it helps! Do you have a certain one you recommend?

I take Vitacost. Chelated. Not mag citrate, but I can’t think of what it is right now.

I have the best results with Allegra, but I also take a leukotriene (sp?) inhibitor, H2 blocker, and azelastine spray. Claritin is underpowered for me, and Zyrtec does nothing for any reaction while making me crazy sleepy. But I will also be really sleepy if my MCAS is flaring.

I had a lot of pain with MCAS—getting it under control made the majority go away.

[Melanie32]

6 hours ago, kbutton said:

I take Vitacost. Chelated. Not mag citrate, but I can’t think of what it is right now.

I have the best results with Allegra, but I also take a leukotriene (sp?) inhibitor, H2 blocker, and azelastine spray. Claritin is underpowered for me, and Zyrtec does nothing for any reaction while making me crazy sleepy. But I will also be really sleepy if my MCAS is flaring.

I had a lot of pain with MCAS—getting it under control made the majority go away.

Thanks so much for sharing what’s helping you. Do you mind me asking what your pain was like? For some reason I’m just now finding out that MCAS can cause muscle pain. I want to find out if this is contributing to my daughter’s pain so we can help treat it and get her feeling better.

[KSera]

Has she already tried famotidine? It usually works best for MCAS combined with an H1 blocker, but since she’s not tolerating those, I wonder if famotidine by itself would still be at least helpful.  

[kbutton]

4 hours ago, Melanie32 said:

Thanks so much for sharing what’s helping you. Do you mind me asking what your pain was like? For some reason I’m just now finding out that MCAS can cause muscle pain. I want to find out if this is contributing to my daughter’s pain so we can help treat it and get her feeling better.

Sometimes achy/throbbing like it was going to storm—that felt more like it was in my bones. Sometimes I had lots of tiny muscle spasms that I didn’t realize were spasming. I felt old and arthritic and like a human barometer.

[Melanie32]

10 hours ago, KSera said:

Has she already tried famotidine? It usually works best for MCAS combined with an H1 blocker, but since she’s not tolerating those, I wonder if famotidine by itself would still be at least helpful.  

We haven’t tried famotidine yet. Her dr hasn’t mentioned it. I’ve read a bit about using it with an H1blocker to treat MCAS. I’ve always heard that long term use of acid reducers is really bad for you. I guess we have to think of the pros and cons and see whether the benefits could outweigh the possible side effects.

[Melanie32]

10 hours ago, kbutton said:

Sometimes achy/throbbing like it was going to storm—that felt more like it was in my bones. Sometimes I had lots of tiny muscle spasms that I didn’t realize were spasming. I felt old and arthritic and like a human barometer.

My daughter does complain of bone pain and muscle spasms so maybe treating the MCAS could help with her pain. I will talk to her Dr about it. 
 

Again, thank all of you so much for your help! I don’t know anyone IRL who has any experience with any of this so y’all have been a great help!💙

[kbutton]

1 hour ago, Melanie32 said:

We haven’t tried famotidine yet. Her dr hasn’t mentioned it. I’ve read a bit about using it with an H1blocker to treat MCAS. I’ve always heard that long term use of acid reducers is really bad for you. I guess we have to think of the pros and cons and see whether the benefits could outweigh the possible side effects.

I think H2 blockers are supposed to be better than PPIs in this regard, though not necessarily benign. MCAS flares can cause many issues including GI stuff/heartburn/reflux, so the likelihood of entirely avoiding an H2 blocker is slim.

A lot of mast cell stuff is better if you can nip it in the bud.

I hope she gets a good combo of meds soon. Some of the fatigue and such get better from treating MCAS. With antihistamines, it can sometimes be hard to know what is sedating from the meds and what is sedating from the host of junk that mast cells are dumping into your bloodstream. I know when I’ve had more acute allergic reactions, just my body’s reaction alone wipes me out.

I also found that a lot of my pain and my “allergy-induced asthma” got remarkably better when I went gluten free.

It’s possible that she’ll find specific triggers that help a lot, and the list they gave you is a common place to start. Just know that triggers are sometimes very individual. I think a lot of people end up have lists of always/almost always avoid, avoid if already provoked/stressed, and almost always safe foods (or environmental triggers!). I used to not be able to mow the lawn without getting geographic hives, and now it’s fine. It’s a process.

Anyway, it’ll get sorted bit by bit.

 

[Melanie32]

1 minute ago, kbutton said:

I think H2 blockers are supposed to be better than PPIs in this regard, though not necessarily benign. MCAS flares can cause many issues including GI stuff/heartburn/reflux, so the likelihood of entirely avoiding an H2 blocker is slim.

A lot of mast cell stuff is better if you can nip it in the bud.

I hope she gets a good combo of meds soon. Some of the fatigue and such get better from treating MCAS. With antihistamines, it can sometimes be hard to know what is sedating from the meds and what is sedating from the host of junk that mast cells are dumping into your bloodstream. I know when I’ve had more acute allergic reactions, just my body’s reaction alone wipes me out.

I also found that a lot of my pain and my “allergy-induced asthma” got remarkably better when I went gluten free.

It’s possible that she’ll find specific triggers that help a lot, and the list they gave you is a common place to start. Just know that triggers are sometimes very individual. I think a lot of people end up have lists of always/almost always avoid, avoid if already provoked/stressed, and almost always safe foods (or environmental triggers!). I used to not be able to mow the lawn without getting geographic hives, and now it’s fine. It’s a process.

Anyway, it’ll get sorted bit by bit.

 

Yes she does have GI issues. She had to quit gluten almost a year ago and has to majorly limit her dairy. Also certain spices bother her. Then she just has random GI issues here and there when we can’t figure out what it is! Her heartburn and acid reflux mostly went away when she cut out gluten.

Sometimes she gets hives from the sun and sometimes she doesn’t. It’s all so random.

 

Thanks again for all your help! I will talk to her Dr about the famotodine for sure! 

[KSera]

@Melanie32 How’s your dd doing?

[KidsHappen]

On 4/3/2024 at 11:22 AM, Melanie32 said:

Thank you so much for taking the time to respond and share this info! Her b12 level was actually too high and the dr said it was because of the supplement I was giving her and to take her off of it. That was her GP. I had started her on vitamin d, b 12 and a low dose of iron as I’d read that those were the most common vitamin deficiencies for celiac patients. 
 

Could these blood results be possible with pernicious anemia?

NVM. Looks like you are on the right track.

Edited September 16 by KidsHappen

[Melanie32]

2 hours ago, KSera said:

@Melanie32 How’s your dd doing?

@KSera Thank you so much for asking about her! That is so thoughtful of you. 💗

 

She is slowly improving with meds, PT and pool therapy. Her dr has her on sodium for the Disautonomia and Chromolyn for the MAST cell issues. Apparently it’s a MAST cell stabilizer. Her overall pain is a bit better and she is growing stronger. It’s a slow go as they have to strengthen her muscles without pulling her joints out due to her Hypermobility Disorder/ possible Hypermobility EDS.

Her rashes and GI issues have improved with the meds. Her tachycardia has improved with the sodium tablets but her heart rate still gets too high. It can go up past 130 when she stands up sometimes but usually is under 120-still too high. She has an appt with her dr on Wednesday and we will see what he thinks about it.

 

It’s been a crazy train but I am so thankful for every small improvement. 
 

How are you and your family doing?