Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

My Daughter -21yrs Old

Lisa

Recommended Posts

Lisa Mentor
Lisa
Posted

Hey Guys:

Annie and I are going to the doctors again tomorrow. Annie suffers from cronic constipation and has great pain after eating. She "goes" about every third or forth day, with the constant urge to do more, but can't.

She wakes up every morning with a terrible headache that can last throughout most of the day and sometimes into the evening.

When the stomach pain hits, she is almost doubled over. (I remember the feeling as I was there and felt like I was going to pass out twenty five years ago).

She is not on the gluten-free diet, but I feel that she has a pre-disposition to celiac disease.

My GP tested her for the blood test...but what a joke. Don't know what they tested her for and just got a call that "it" was negative. That was the end of that, so we are going to a new doctor. He is an Ostiopathis Doctor (sp). He is so cool and I really like him. He has certainly made my life more pleasurable.

My question is: Should she do the blood test for celiac disease, or should she do the endocopy. or maybe an MRI.....The headaches have to go. They are sometimes bad enough that she is unable to do what she needs to do.

Eyes check out ok, and no wisdom teeth...those issues we have ruled out.

Any thoughts that I can bring to the doctors office, please.......

Lisa B.

Any suggestions as we go tomorrow.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


julie5914 Contributor
julie5914
Posted

Yeah, I recently started seeing an osteopathic doctor - I hope he can help you by looking at the whole picture. The best thing is that he likely will not stop looking for the cause of those headaches just after receiving one lab test neg. He may call for an MRI, which will likely be ok but it would ease your mind a bit I am sure.

If he is a DO like mine, he will ask you and your daughter a ton of questions to get to the cause of the headaches and you will likely not have forgotten to tell him something because he will cover it all. Bring all of her med records if you have not already sent them to him. They could be caused by a number of things, but I bet he will find it (though it may cost a bit).

Definitely tell him the slightest thing that you think might be just a fluke. Every single symptom, even if you think it isn't related or you think it might steer him away from Celiac (though if you mention Celiac, he will likely look into it completely). My doctor honed in on adrenal problems, and when I read more about it, there were specific things that I hadn't even considered as symptoms because I'd lived with it for so long, like itchy skin, waking up every night between 2-4, unable to stand in one place for more than 30 min, and trouble digesting meat. Who would have linked those weird things together?

Lisa Mentor
Lisa
Posted
  • Author

Thanks Julie:

All those things will be helpful tomorrow. We signed waiver for all her hospital records to be in his office by now. We live in a small town so lots of the tests are done at the hospital. He should have the records by now.

I feel so helpless. She is getting married in June and I want her to be in good health to enjoy this time.

She is in college and commutes from home. When not going to school she sleeps until lunch and misses meals. Typical young persons agenda. We'll try to work it out tomorrow.

Thanks for your impute.

Lisa B.

judy05 Apprentice
judy05
Posted
Hey Guys:

Annie and I are going to the doctors again tomorrow.  Annie suffers from cronic constipation and has great pain after eating.  She "goes" about every third or forth day, with the constant urge to do more, but can't.

She wakes up every morning with a terrible headache that can last throughout most of the day and sometimes into the evening.

When the stomach pain hits, she is almost doubled over. (I remember the feeling as I was there and felt like I was going to pass out twenty five years ago).

She is not on the gluten-free diet, but I feel that she has a pre-disposition to celiac disease.

My GP tested her for the blood test...but what a joke.  Don't know what they tested her for and just got a call that "it" was negative.  That was the end of that, so we are going to a new doctor.  He is an Ostiopathis Doctor (sp).  He is so cool and I really like him.  He has certainly made my life more pleasurable.

My question is:  Should she do the blood test for celiac disease, or should she do the endocopy. or maybe an MRI.....The headaches have to go.  They are sometimes bad enough that she is unable to do what she needs to do.

Eyes check out ok, and no wisdom teeth...those issues we have ruled out.

Any thoughts that I can bring to the doctors office, please.......

Lisa B.

Any suggestions as we go tomorrow.

<{POST_SNAPBACK}>

I personally would first check her B/p, my son and I both had bad headaches prior to being diagnosed with hypertension. If the headches are over both eyes, it is likely a sinus headache, sometimes these can occur as a result of milk intolerance. Of course she should have the gene test and celiac panel to check for antibodies. I highly recommend Citracel fiber pills for the constipation. The headaches could be caused by the constipation alone. Don't go gluten free until all of the testing is done. If any of the antibodies are elevated then of course she should have an Endoscopy and Colonoscopy since she is also presenting with stomach pain and distress. These are a few of my suggestions, I hope you have good luck with the new Dr and you get to the bottom of her problems. Theses things helped me...

jerseyangel Proficient
jerseyangel
Posted

It's true that morning headaches can be caused by high BP. I used to wake up with pain in the back of my head and neck (at the base of my skull) and it would usually last untill I took a shower or was up and around for a while. It turned out I had high BP. After going on medication, the headaches went away and have not returned--its been about 6 mo. I don't think it is related to celiac disease, but this happened right around the time of my DX of celiac disease. Just a lousy coincidance :angry: I guess.

Lisa Mentor
Lisa
Posted
  • Author

Thanks for your responses.

Today, he switched her meds a little. For the stomach pain he wants her to try Hyoscyamine to be taken twice a day. For the headaches he gave her two Relpax (migrain med) to see if this will make the headache go away. If these do not work, he suggested that she go off Estrostepp (BC) for a month to see if headaches are relieved. Trying to eliminate possible sources before doing an MRI or endoscopy.

She is in college, making wedding plans, trying to pass the Praxis test (for ed.major), dad freekin about the cost of putting on a wedding and she is high strung by nature and a controll freak. HEADACHE STRESS IS HIGHLY LIKELY. Stress is making the IBS worse, constipation bringing on the headaches, and around and around we go. :(

Does all that make sense???

What do you all think? I do not now think that this is celiac disease but unless handled now, could very well be in the future. :(

Thanks for any input and those that have already posted in.

Lisa B.

julie5914 Contributor
julie5914
Posted

So has she still not been tested for celiac? I would really for push for this - that sounds like me before diagnosis, except I didn't have headaches every day. Should especially get tested since you have it.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Lisa Mentor
Lisa
Posted
  • Author
So has she still not been tested for celiac? I would really for push for this - that sounds like me before diagnosis, except I didn't have headaches every day. Should especially get tested since you have it.

<{POST_SNAPBACK}>

Nope. I did request one blood test from her PP, and then I called them after two weeks and they sent to results to MY Gastro Dr. (who dosen't know who in the heck she is). PP's nurse said it was neg., but I have seen not a copy, nor numbers.

Should we run the full panel, or go straight for the endoscopy? What do you think?

Headaches are mostly above her eyes and last all day, every day.

Thanks for your impute. :(

julie5914 Contributor
julie5914
Posted

I'd go for endoscopy if your insurance will cover. With that kind of stomach pain, endoscopy may be able to show something else wrong if it isn't celiac. Make sure the main purpose is to check for celiac though of course and that they take mult. samples for biospy.

Lisa Mentor
Lisa
Posted
  • Author
So has she still not been tested for celiac? I would really for push for this - that sounds like me before diagnosis, except I didn't have headaches every day. Should especially get tested since you have it.

<{POST_SNAPBACK}>

Thanks Julie:

She has not been tested yet, trying to see if the meds for her consipation/and spasams will settle down the headaches. She not complaining as much, so that may be working. If not on the endoscopy.

Thanks for keeping up with us. :)

debmidge Rising Star
debmidge
Posted

Lisa

You asked for advice and what we all think. I want to address the headaches. I understand your daughter is preparing to get married, did she recently go on birth control pills in preparation for marriage? I used to get terrible headaches from them when I took them (I've stopped them just a few years ago and the headaches never returned). ...Just a thought of what could trigger a migraine/headache in a young woman. Also, I believe BC pills affect blood pressure too.

Lisa Mentor
Lisa
Posted
  • Author
Lisa

You asked for advice and what we all think.    I want to address the headaches.  I understand your daughter is preparing to get married,  did she recently go on birth control pills in preparation for marriage?    I used to get terrible headaches from them when I took them (I've stopped them just a few years ago and the headaches never returned).  ...Just a thought of what could trigger a migraine/headache in a young woman.  Also, I believe BC pills affect blood pressure too.

<{POST_SNAPBACK}>

The birth control most likely is the culprit. She has an appointment next week and will consult her Doctor. Her blood pressure is right on the mark. Thank you all for you input.

Matilda Enthusiast
Matilda
Posted

..

Lisa Mentor
Lisa
Posted
  • Author

She has already had A blood test, but not the full panel. It was negative.

Head aches are calming down.....we'll take every day as a test.

As said in a pre-post, she will see her gyno next week and discuss the head aches. Perhaps they will switch her to another brand. If in a few weeks, the aches will not subside, then we will do the endoscopy.

We will keep a very close watch on her as she is genetically disposed to celiac disease. She is young and just now learning to cook ( as recommended by her fiance).

In my heart and in my gut, I don't feel that it is celiac disease. Mothers kinda know these things.

I will keep you all posted as you have informed me and help me make judgements.

Without this message board, I truely don't know what I would have done in handling this infliction. Guess this is a new post.

But thank all of you that feel concern for us, as I do for you.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.