Need Mentor or Guidance (Desperately!!!)

[ssmith]

Hello!

 

I have read many forums on this site over the past few months and it has been incredibly helpful. I am here now because I am basically in a "resource desert" as far as services and doctors in my area and I desperately need advice. 

Question & Concern #1: I have been gluten free for about 6 months now due to problems that started about a year and a half ago including constipation, gas, bloating, anxiety & depression. After going gluten free my symptoms quickly resolved themselves and I have been happily gluten free ever since. 

However, my doctor (I have had no previous medical issues and so I trusted her opinion without doing my own research -believe me I learned my lesson) does not connect those symptoms with Celiacs disease so even though I thought that there was a connection and voiced my opinions, testing was not done. I was told that it "didn't matter" if I had the diagnosis since the treatment either way is eating gluten free. I have learned from this site that was 100% wrong. Although I may not have Celiacs, even if there is a 1% chance that I do, I feel that I deserve to know. 

I have a doctors appointment this week and I really need advice for what to fight for, so far I have heard of these options:

1. Eating gluten for 90 days and getting a blood test done (although I have heard this is not the most accurate way to diagnos Celiacs and I dread the thought of eating gluten for 90 days)

2. Eating gluten for 2 weeks and getting an endoscopy - am I allowed to request this?? 

3. Genetic testing - sort of what I am leaning towards right now because if I do have the genetic disposition I would just live the rest of my life like I have Celiacs. Is there any reason that I NEED the actual diagnosis? 

If you were in my situation what would you recommend? 

Question & Concern #2: I was tested for hypothyrodisim because everyone in my maternal family has been diagnosed with that but they all were diagnosed later in life (early 40s, I believe my mother went through premature menopause becuase it was undiagnosed for so long). Nobody in my family has heard of Hashimotos but when talking with my friend who is a nurse who has Hashimotos she said that sometimes the TSH test that I was given won't pick up on that. My TSH result was a 2.6 which I believe is slightly higher than the ideal range although the normal range on that result was considered up to a 5. I am going to go in and request to make sure that I don't have hypothyroidism of any kind including Hashimotos. Does anybody have any relevant advice for what tests I should request? I have been googling it but I was wondering if anybody went through that and has personal experience for the tests. 

I also really need to know:

- Can going gluten free help cure Hashimotos/Hypothyrodism symptoms? (I also am FREEZING cold all the time which is another indicator of that and most of the reasons I went gluten free could be indicators of Hashimotos as well - I do know there is a connection but I really didn't know if eating gluten free would help alievate the symptoms). 

-Will going gluten free affect getting a diagnosis for Hypothyroidsm/Hashimotos? 

To add on to it - My husband & I were planning on trying to start a family in March so I really pray that all this can be resolved quickly so we can start our family in the next year because I don't want to start trying until I have some answers.

ANY advice/websites/articles/books would be incredibly helpful for me right now. If you know anybody on the site who has experience with Hashimotos and gluten sensitivity or Celiacs I would be super appreciative if you could reach out to them to get me some help. I am in the process of finding a new doctor but it is a slow process (no appointments in my area until February) so I am keeping my appointment with the doctor who doesn't want to do the Celiacs testing so I want to be as informed as possible so I can really stick to my guns and insist on what is best for me (and my future babies!!). I feel lost & not sure what information is reliable so I'm just looking for people who have more experience than I do to help! 

Thank you all so much 

~Shannon

[cyclinglady]

1 hour ago, ssmith said:

Hello!

 

I have read many forums on this site over the past few months and it has been incredibly helpful. I am here now because I am basically in a "resource desert" as far as services and doctors in my area and I desperately need advice. 

Question & Concern #1: I have been gluten free for about 6 months now due to problems that started about a year and a half ago including constipation, gas, bloating, anxiety & depression. After going gluten free my symptoms quickly resolved themselves and I have been happily gluten free ever since. 

However, my doctor (I have had no previous medical issues and so I trusted her opinion without doing my own research -believe me I learned my lesson) does not connect those symptoms with Celiacs disease so even though I thought that there was a connection and voiced my opinions, testing was not done. I was told that it "didn't matter" if I had the diagnosis since the treatment either way is eating gluten free. I have learned from this site that was 100% wrong. Although I may not have Celiacs, even if there is a 1% chance that I do, I feel that I deserve to know. 

I have a doctors appointment this week and I really need advice for what to fight for, so far I have heard of these options:

1. Eating gluten for 90 days and getting a blood test done (although I have heard this is not the most accurate way to diagnos Celiacs and I dread the thought of eating gluten for 90 days)

2. Eating gluten for 2 weeks and getting an endoscopy - am I allowed to request this?? 

3. Genetic testing - sort of what I am leaning towards right now because if I do have the genetic disposition I would just live the rest of my life like I have Celiacs. Is there any reason that I NEED the actual diagnosis? 

If you were in my situation what would you recommend? 

Question & Concern #2: I was tested for hypothyrodisim because everyone in my maternal family has been diagnosed with that but they all were diagnosed later in life (early 40s, I believe my mother went through premature menopause becuase it was undiagnosed for so long). Nobody in my family has heard of Hashimotos but when talking with my friend who is a nurse who has Hashimotos she said that sometimes the TSH test that I was given won't pick up on that. My TSH result was a 2.6 which I believe is slightly higher than the ideal range although the normal range on that result was considered up to a 5. I am going to go in and request to make sure that I don't have hypothyroidism of any kind including Hashimotos. Does anybody have any relevant advice for what tests I should request? I have been googling it but I was wondering if anybody went through that and has personal experience for the tests. 

I also really need to know:

- Can going gluten free help cure Hashimotos/Hypothyrodism symptoms? (I also am FREEZING cold all the time which is another indicator of that and most of the reasons I went gluten free could be indicators of Hashimotos as well - I do know there is a connection but I really didn't know if eating gluten free would help alievate the symptoms). 

-Will going gluten free affect getting a diagnosis for Hypothyroidsm/Hashimotos? 

To add on to it - My husband & I were planning on trying to start a family in March so I really pray that all this can be resolved quickly so we can start our family in the next year because I don't want to start trying until I have some answers.

ANY advice/websites/articles/books would be incredibly helpful for me right now. If you know anybody on the site who has experience with Hashimotos and gluten sensitivity or Celiacs I would be super appreciative if you could reach out to them to get me some help. I am in the process of finding a new doctor but it is a slow process (no appointments in my area until February) so I am keeping my appointment with the doctor who doesn't want to do the Celiacs testing so I want to be as informed as possible so I can really stick to my guns and insist on what is best for me (and my future babies!!). I feel lost & not sure what information is reliable so I'm just looking for people who have more experience than I do to help! 

Thank you all so much 

~Shannon

Hi!  

Lots of questions.   I recommend continuing your research on both subjects, but I will try to help.  

1.  Gluten challenge: 

Open Original Shared Link

2.  Endoscopy in two weeks after a gluten challenge?  Sure, if you can find a GI who would do it based on blood tests and/or symptoms.   Often insurance dictates.  

3.  Genetic testing.  This is used to rule out celiac disease.  Some 30 to 40% of the population carries the genes, but only a tiny few go on to develop celiac disease.  So, not good for diagnosing celiac disease.  It can be used if parents want to avoid an endoscopy on their toddlers/children when they have a positive blood test.  It can be used for first-degree relative to use to opt out life-long future celiac disease testing.  I will not even get into the fringe genes that have yet to be discovered or made well-known.   And...think about what future insurance may do with that information?  I have been on the rejection end of health insurance with a few simple ailments!  So be careful!  

Hashi’s.  You could ask for antibodies testing and a full thyroid panel,  Again, hard to do often based on insurance parameters.  You are simply cold.  (Got a blue fingers or toes?  Really blue, like scary blue? That is another autoimmne disorder that is not curable).  Any nodules, thyroid enlargement that could make your doctor/insurance look beyond a normal TSH?  Even if positive, there is not much you can do if you have a normal TSH and the rest of your thyroid functioning process is okay.  Supplementing might make you hyper which in my opinion, is much worse (having been hyper and hypo).  

Keep researching so that you can make informed decisions.  If all else fails and you still want to investigate, order and pay for the lab testing cash yourself.  

 

[ssmith]

2 hours ago, cyclinglady said:

Hi!  

Lots of questions.   I recommend continuing your research on both subjects, but I will try to help.  

1.  Gluten challenge: 

Open Original Shared Link

2.  Endoscopy in two weeks after a gluten challenge?  Sure, if you can find a GI who would do it based on blood tests and/or symptoms.   Often insurance dictates.  

3.  Genetic testing.  This is used to rule out celiac disease.  Some 30 to 40% of the population carries the genes, but only a tiny few go on to develop celiac disease.  So, not good for diagnosing celiac disease.  It can be used if parents want to avoid an endoscopy on their toddlers/children when they have a positive blood test.  It can be used for first-degree relative to use to opt out life-long future celiac disease testing.  I will not even get into the fringe genes that have yet to be discovered or made well-known.   And...think about what future insurance may do with that information?  I have been on the rejection end of health insurance with a few simple ailments!  So be careful!  

Hashi’s.  You could ask for antibodies testing and a full thyroid panel,  Again, hard to do often based on insurance parameters.  You are simply cold.  (Got a blue fingers or toes?  Really blue, like scary blue? That is another autoimmne disorder that is not curable).  Any nodules, thyroid enlargement that could make your doctor/insurance look beyond a normal TSH?  Even if positive, there is not much you can do if you have a normal TSH and the rest of your thyroid functioning process is okay.  Supplementing might make you hyper which in my opinion, is much worse (having been hyper and hypo).  

Keep researching so that you can make informed decisions.  If all else fails and you still want to investigate, order and pay for the lab testing cash yourself.  

 

Thank you so much for your help!! I really appreciate it. I know I am super uninformed on these topics but I find it easiest to learn from other people so thank you again. 

 

I did have a follow up question if I did get the genetic testing (which based on your information may not be my best option) if I am found positive for the gene AND I have a reaction to gluten, could it still be possible that I don't have Celiacs? It could just be a sensitivity or something else? 

 

No my extremeties don't get blue, I just hadn't realized that I was extremely cold compared to other people (like sleeping with multiple fleece layers and always wearing my winter jacket inside). Thank you for the information about Hashimotos, I really don't know anything about that and didn't realize that it was possible to have Hashimotos but have my TSH in normal levels until talking with my friends. 

 

Do you have any suggestions for what you would do if you were in my position? Would you suggest just not getting any tests and keep doing what feels good for my body? 

Thank you so much again!!!

[cyclinglady]

Yes, even with a positive on the genetic test and feeling better on a gluten free diet, does not mean you have celiac disease.  You could have a sensitivity (all the symptoms, but no intestinal damage) or you could have issues with FODMAP foods (wheat is one of them).  The gold standard is still the intestinal biopsy.  Again, if your antibodies were super high, then odds are you would have celiac disease.  Really nothing elevates  celiac disease antibodies super high other than celiac disease.  They might be slightly elevated for other autoimmune disorders.

I will share my story.  My hubby went Gluten Free 16 years ago per the POOR advice from our GP and my allergist.  Oh,  the diet worked after a year of adjusting and making mistakes.  But does he really have celiac disease?  We do not know and he refuses to do a challenge.  Feeling good trumps feeling sick.  Me?  I went in for a routine colonoscopy (yep, I am over 50) 12 years after my hubby went Gluten free.  My GI looked at my chart and noted my life-long issues with amenia.  I have two kinds of anemia (one is genetic).  The iron-deficiency anemia is what my GI noted.  Despite repeated supplementation, I still had it even after going through menopause.  He ordered a full celiac antibodies panel.  He scoped  me from both ends and found intestinal villi damage.  No disputes.  FOR SURE.  And I needed that diagnosis because I did not have GI issues at the time and worse yet, I knew exactly how a gluten free diet was going to impact my lifestyle.  You bet I was in denial, but the lab results do not lie.  

My hubby would be the first to tell you that I get more support from family, friends and medical staff.  They believe me.  Him?  Some doubt (but we know better).  With my diagnosis, I was able to get the full celiac panel for my daughter and  have her thyroid monitored).  No fighting with her doctor or insurance because celiac disease is definitely genetic.    Two months into my diagnosis, I fractured my back doing NOTHING.  Yep, I had osteoporosis thanks to celiac disease.  It has been easy to get vitamin deficiency tests, bone scans, etc.  because I have a diagnosis.  Even my new GI has been supportive especially since I gave him hard copies of everything for the past 20 years with a summary cover sheet.  

The cold?  My SIL was always cold.  Her thyroid was and is fine.  Now she went through menopause.  She is always hot now.  Having flashes, wearing light layers and even wearing her hair up.  So, you might have to wait a few decades. ? to get relief.

The problem with autoimmune issues is that symptoms often overlap.  My doctor and I suspect  another AI issue, but what am I going to do? Take drugs?  No.  So I just keep moving forward.  That is something else to consider.  Just keep in mind your family history and get tested if needed.  

You know your particular set of health circumstances.  Only you and your doctors can make the best course of treatment for YOU.  

 

[Awol cast iron stomach]

1. Eating gluten for 90 days and getting a blood test done (although I have heard this is not the most accurate way to diagnos Celiacs and I dread the thought of eating gluten for 90 days)

Best practices based on current testing parameters etc. & also scope if you can. Depends on insurance sometimes only blood test initially covered etc. Ideally they want 90 days.

I have been there-  I could not finish a 90 day challenge.

I did what we are not suppose to do-Rebellious I guess and likely desperate after decades of mis diagnosis. I went gluten-free and then after a horrible mistake or intentional malevolent screw up at a restaurant I got badly glutened after 3 1/2 years of gluten-free. I called ahead asked if they could accommodate me etc, did best to advocate for self, and failed -they fed me gluten. I became extremely ill, knew when I bit into the flour, stopped eating immediately, reacted worse then ever in the days following, I finally went for testing - I had a 1st cousin who was gold standard Celiac diagnosed. It however took her if I recall correctly 2 years and over a dozen Dr's. I had so many symptoms off the charts then ever I crawled to Dr's desperate to get some help for my symptoms. Unfortunately not much relief , but an allergist/immunologist finally got me to a Celiac team. I had to wait 2-3 months to get in.

2. Eating gluten for 2 weeks and getting an endoscopy - am I allowed to request this?? 

Yes- as cycling lady said insurance may not allow this/pay for it.  My doctors took me this route. We verified before insurance would pay- we still had co pays and bills. I told them I knew I could not do a 12 week challenge and my husband agreed. I at first refused to do the 2 week challenge, but would do a scope. I eventually gave in and for my kids (and since I still had many horrible symptoms) I said ok I'll try to do scope me both ends. I was mis diagnosed as IBS for 20 plus years based on symptoms only. I failed I could not get past day 6. I stopped tried to do a seventh day but could not.  I am not trying to discourage you from doing this- it was not for naught. I was trying to do the dual gluten/gluten-free household the ordeal taught me (and my husband stated) all gluten is being removed from this house. I needed this more than I ever new. We also learned my son had my issues, and that I had multiple additional food intolerances that had to be removed. I hated the experience, but on a good day I am grateful for the team who helped reveal this to me. I was so messed up for so long I could not see the forest through the trees. They took me off all processed foods even gluten-free and had me keep a stringent food diary. I also when damaged react poorly to toxins in and around the environment MCS that I suspected but the ordeal gave complete clarity too.  Ideally I would complete the 2 weeks, but I could not to be blunt the toll including mental was so strong that I had to be sensible as my children needed a mother and I could not fight so hard for that gold standard diagnosis that it got so dark that I left my husband a widower and 2 kids motherless. We learned a lot. Gluten and my other issues were removed from the home, my son has this, and it was bigger than I thought, but got complete clarity and learned a very valuable lesson. This went undiagnosed longer than it should, Gluten and other foods had to be removed from my life, I had to stop work etc to focus on my health for this was undiagnosed/misdiagnosed too long.

3. Genetic testing - sort of what I am leaning towards right now because if I do have the genetic disposition I would just live the rest of my life like I have Celiacs. Is there any reason that I NEED the actual diagnosis? 

I wasn't offered this. I assume my insurance would not do it or my team/Celiac clinic did not see this as a match for me.

If you were in my situation what would you recommend? 

I have been there. I wish my situation after being happily gluten free had not happened, but it was beyond my control. It gave complete clarity to the depth of my situation, connected a ton of medical dots throughout my lifetime, I learned the depth and degree of it not just gluten , but other issues too, my experience has made things better for my dear son. I am still not healthy enough yet to fully embrace and say this was meant to be and I am grateful this occurred and it was meant to be-yet. It was though and when I heal better than I am now) I will accept that. I learned much and even though I was gluten-free for 3 1/2 years because I felt better I didn't self diagnose myself as Celiac and join this forum until I went to the Celiac Team for testing-this was essential. I know I am celiac from a lifetime of symptoms -I won't bore you with details there are  many in  my posts-DH diagnosed as PUPPP's etc . Deep down I likely was in denial despite being gluten-free on 1. because I was mis diagnosed and 2. there are a whole lot of emotions etc that go with a lifetime of not knowing that came out , but I suppose it was not my time.

Ideally if you can and insurance will pay it is worth doing-it is a path and journey in and of itself. Likely you already know the answer to-but for those diagnosed the resources etc and having that record and closure is helpful. Who knows who in the family or you come across in life you may help as well. Plus we are here for you.

Question & Concern #2: I was tested for hypothyrodisim because everyone in my maternal family has been diagnosed with that but they all were diagnosed later in life (early 40s, I believe my mother went through premature menopause becuase it was undiagnosed for so long). Nobody in my family has heard of Hashimotos but when talking with my friend who is a nurse who has Hashimotos she said that sometimes the TSH test that I was given won't pick up on that. My TSH result was a 2.6 which I believe is slightly higher than the ideal range although the normal range on that result was considered up to a 5. I am going to go in and request to make sure that I don't have hypothyroidism of any kind including Hashimotos. Does anybody have any relevant advice for what tests I should request? I have been googling it but I was wondering if anybody went through that and has personal experience for the tests. 

I am glad cycling lady responded. I immediately thought of her.  I know when I am on gluten my thyroid feel off. I have been checked 2-3 times in life and I test "normal" , but I feel it is faltering. My mom (a nurse) after all this stuff stated you might be subclinical, enough you feel it, but the test doesn't catch it. I take comfort in her wisdom.

 

Good luck on y our journey

[Awol cast iron stomach]

5 hours ago, ssmith said:

To add on to it - My husband & I were planning on trying to start a family in March so I really pray that all this can be resolved quickly so we can start our family in the next year because I don't want to start trying until I have some answers.

Oh my I just re read your post. Ok now I am going to definitely say yes-you need to find someone who will test you. If this Dr. will not you may want to look for one who will.

I slowly reveal my issues on here and I still keep things close to the vest.

My pregnancies/labor/deliveries were impacted by my not knowing of my illness earlier.
I lost my first as a missed miscarriage IUGR- likely undiagnosed Celiac. I was high risk delivery with my daughter and then a high risk pregnancy/delivery with my son. I had problems with both and was far from "normal" with both of the children I am blessed to have. I had a horrible  rash after my daughter that was diagnosed as PUPPP by physical observation/no sample taken. which I continued to experience on and off in milder form over the subsequent years after on my butt, elbows, knees, arms, hands etc. I see on here  that is spot on DH. Another missed opportunity. My son had additional problems during pregnancy, had NICU, PICU and surgeries within the first year of life.

I am strongly encouraging you to look into this now if you can check for Celiac and other auto immune now before starting your pregnancies for you and your child/children's health and well being. That way you know how to best support both you health and are fully nutritionally supported before pregnancy.

 

Best wishes and good luck

[ssmith]

Thank you so much for your responses!! It is so hard because there are so many unknowns, inconclusive results, and lots of waiting!! I didn't realize it was so difficult to even get the tests to begin with. Thank you both SO much. I feel much better & am more comfortable going into my doctors appointment.