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

GillyP

Gilly M
 Share

Recommended Posts

Gilly M Explorer
Gilly M
Posted

Hi.  I'm going round in circles ....4 years ago I started recovery from overtraining and energy deficiency - basically not eating enough for training I did- I ate lots more food, put on weight, reduced exercise.  Hormones normalised/menstruation resumed :)  But symptoms came crashing down :( - not the rejuvenation of health I expected to come.  I also got Lyme disease during the process. 

I suspect my previously stable metabolism was completely disrupted.  The fatigue, dizziness, headaches, aches, and now exercise intolerance (very upsetting after years of being an athlete) - I put down to the energy that "healing" takes- but 4 years down the line I don't think this reason now cuts it! I have very few gut symptoms(one thing that has improved since hormones returned and I put on weight)

I am addressing low vit D and ferritin - but they are at much healthier levels now.  In fact, my bloods (thyroid,vitamins, minerals) are all pretty good. I am still suspicious of food intolerances( although blood IgA test for celiac was negative). 

QUESTIONS:   

1) I thought about cutting out all grains but with my history of low energy I am wary of this making me LOW carb- not great for hormones. Do you think trying just wheat/barley/rye/oats is enough to test for gluten intolerance(NO Grain NO Pain suggest ALL grains are inherently unhealthy???) What are others experiences with this? 

2) Dairy has the vitK2 my mildly osteopenic bones need (plus some calcium- although I know it's not THE source- and other good stuff) - but maybe I should cut this out too? 

3) Then what about eggs? Grains/dairy/eggs- makes me fear that my likely sensitive hormones won't like this cut in so many foods?? 

Any suggestions and own experiences would be greatly appreciated - I need to try something and stick to it- instead of flip flopping and not trying anything for long enough.

 

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

Celiac.com Sponsor (A8-M):


Scott Adams Grand Master
Scott Adams
Posted

Welcome to the forum! Just to be clear, you do not have celiac disease but may have gluten sensitivity and are thinking of going grain-free. Going grain-free does usually make it hard for you to get enough carbohydrates, and there are many other gluten-free grains you could try if your goal is only to eliminate gluten for a few months to see if it helps relieve any of your symptoms.

Here is a list of gluten-free foods, including alternative grains:

You also brought up "exercise intolerance," which is a term I've not heard. I'm not sure how much you were exercising before to reach a point where your menstruation stopped, but is it possible it was at a level that might be considered exercise addiction? Most people only need to exercise 20-30 minutes 3-5 times a week to keep healthy.

You may want to go dairy-free for a while, just to see if you have issues with dairy. Supplementation is important whenever you are making big changes in your diet, so you may want to take a good multi-vitamin and possibly supplement other vitamins & minerals as well.

Chicken eggs can also be an issue for some people, they were for me before I went gluten-free, but I did not have issues with duck eggs, which I can get at my local farmer's market. 

So you've brought up several different symptoms, and given that you have Lyme disease it would be difficult to say how many of your symptoms could be related to gluten sensitivity or to Lyme disease, but keeping a good food diary and cutting out groups of foods and adding them back later is a good way to discover if they are causing you issues. Consider working with a registered dietitian as well, because they may be able to guide you through this in a more healthy way.

Gilly M Explorer
Gilly M
Posted
  • Author

Hi Scott, Thanks for replying so quickly!    And for your detailed reply too.  

Yes - my case is not so straightforward as X=Y; there are quite a lot of confounding factors are at play and often the answer to one (eat all the foods and restore metabolism) is polar opposite to the other(cut out foods to recover from Lyme/chronic fatigue/migraines etc!) - but I guess not many people's health journeys are straight-forward!

I was a competitive athlete for 20 years  so probably trained moderate -hard 10 -15 hours plus then easy stuff on top of that.  And yes I likely overdid all my sessions. By "Exercise Intolerance" I mean that I don't seem to manage any exercise besides a dog walk- Otherwise I get head pressure, breathing issues, aches and it takes me days sometimes weeks to recover....I know I'm unfit now but the symptoms are far more than that.

When I have gone low carb for a few weeks- it just didn't feel "right" - do you think some people can tolerate gluten?  Do you think that there is a degree of gluten sensitivity in everyone?  I believe with me there is a lot of making my symptoms fit what I read- so when I read about gluten , I think gluten issues could explain my symptoms (I also have/have had on and off anxiety but low hormones/low vit D/low iron can cause this too)

Working with a dietitian is probably my best bet if I'm going to go down the route of elimination.  Trying to do this myself is becoming a bit of a vicious cycle and I'm concerned I am actually worsening things.

Many thanks again for your reply : )

Scott Adams Grand Master
Scott Adams
Posted

For those in the non-celiac gluten sensitivity spectrum, I definitely believe that there is a very wide spectrum of symptoms and health issues associated with eating gluten, and migraine headaches have been shown in numerous studies to be related to those with untreated celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/ 

Gluten is one of the hardest things for anyone to digest, so I do think that it can cause various digestive and other issues in many people, even if they don't have celiac disease. It would be worth trying a gluten-free diet for a few months to see if it helps with your symptoms.

Gilly M Explorer
Gilly M
Posted
  • Author
1 hour ago, Scott Adams said:

For those in the non-celiac gluten sensitivity spectrum, I definitely believe that there is a very wide spectrum of symptoms and health issues associated with eating gluten, and migraine headaches have been shown in numerous studies to be related to those with untreated celiac disease:

https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/ 

Gluten is one of the hardest things for anyone to digest, so I do think that it can cause various digestive and other issues in many people, even if they don't have celiac disease. It would be worth trying a gluten-free diet for a few months to see if it helps with your symptoms.

Thanks Scott.  I never used to get migraines - ever. And I ate loads of bread/pasta/couscous.  Up until 4 years ago that is - now it seems like a constant migraine - Ok, slight exaggeration as there have been days/weeks I haven't had any. 

I've tried to spot patterns but I try to change too many variables at the one time- iron/vit D/gluten/carbs..... I imagine that stress and any other dip in the system/immunity makes gluten harder to digest. 

Many thanks again. This is an excellent resource and you have been very helpful. :) Hope your symptoms have now all abated/gone.

Scott Adams Grand Master
Scott Adams
Posted

Let us know how things go, and good luck!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,242
    • Most Online (within 30 mins)
      7,748
    rickak
    Newest Member
    rickak
    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
      Accuracy of testing concerns

      By knitty kitty · Posted

      Welcome to the forum, @McKinleyWY, For a genetic test, you don't have to eat gluten, but this will only show if you have the genes necessary for the development of Celiac disease.  It will not show if you have active Celiac disease.   Eating gluten stimulates the production of antibodies against gluten which mistakenly attack our own bodies.  The antibodies are produced in the small intestines.  Three grams of gluten are enough to make you feel sick and ramp up anti-gluten antibody production and inflammation for two years afterwards.  However, TEN grams of gluten or more per day for two weeks is required to stimulate anti-gluten antibodies' production enough so that the anti-gluten antibodies move out of the intestines and into the bloodstream where they can be measured in blood tests.  This level of anti-gluten antibodies also causes measurable damage to the lining of the intestines as seen on biopsy samples taken during an endoscopy (the "gold standard" of Celiac diagnosis).   Since you have been experimenting with whole wheat bread in the past year or so, possibly getting cross contaminated in a mixed household, and your immune system is still so sensitized to gluten consumption, you may want to go ahead with the gluten challenge.   It can take two years absolutely gluten free for the immune system to quit reacting to gluten exposure.   Avoiding gluten most if the time, but then experimenting with whole wheat bread is a great way to keep your body in a state of inflammation and illness.  A diagnosis would help you stop playing Russian roulette with your and your children's health.      
    • trents
      Accuracy of testing concerns

      By trents · Posted

      Welcome to the celiac.com community, @McKinleyWY! There currently is no testing for celiac disease that does not require you to have been consuming generous amounts of gluten (at least 10g daily, about the amount in 4-6 slices of wheat bread) for at least two weeks and, to be certain of accurate testing, longer than that. This applies to both phases of testing, the blood antibody tests and the endoscopy with biopsy.  There is the option of genetic testing to see if you have one or both of the two genes known to provide the potential to develop celiac disease. It is not really a diagnostic measure, however, as 30-40% of the general population has one or both of these genes whereas only about 1% of the general population actually develops celiac disease. But genetic testing is valuable as a rule out measure. If you don't have either of the genes, it is highly unlikely that you can have celiac disease. Having said all that, even if you don't have celiac disease you can have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms as celiac disease but does not involve and autoimmune reaction that damages the lining of the small bowel as does celiac disease. Both conditions call for the complete elimination of gluten from the diet. I hope this brings some clarity to your questions.
    • McKinleyWY
      Accuracy of testing concerns

      By McKinleyWY · Posted

      Hello all, I was diagnosed at the age of 2 as being allergic to yeast.  All my life I have avoided bread and most products containing enriched flour as they  contain yeast (when making the man made vitamins to add back in to the flour).  Within the last year or so, we discovered that even whole wheat products bother me but strangely enough I can eat gluten free bread with yeast and have no reactions.  Obviously, we have come to believe the issue is gluten not yeast.  Times continues to reinforce this as we are transitioning to a gluten free home and family.  I become quite ill when I consume even the smallest amount of gluten. How will my not having consumed breads/yeast/gluten for the better part of decades impact a biopsy or blood work?  I would love to know if it is a gluten intolerance or a genetic issue for family members but unsure of the results given my history of limited gluten intake.   I appreciate the input from those who have gone before me in experience and knowledge. Thank you all!
    • trents
      A little about me and my celiac disease

      By trents · Posted

      I know what you mean. When I get glutened I have severe gut cramps and throw up for 2-3 hr. and then have diarrhea for another several hours. Avoid eating out if at all possible. It is the number one source of gluten contamination for us celiacs. When you are forced to eat out at a new restaurant that you are not sure is safe, try to order things that you can be sure will not get cross contaminated like a boiled egg, baked potatos, steamed vegies, fresh fruit. Yes, I know that doesn't sound as appetizing as pizza or a burger and fries but your health is at stake. I also realize that as a 14 year old you don't have a lot of control over where you eat out because you are tagging along with others or adults are paying for it. Do you have support from your parents concerning your need to eat gluten free? Do you believe they have a good understanding of the many places gluten can show up in the food supply?
    • Peace lily
      Gluten Free Coffee

      By Peace lily · Posted

      Okay went online to check green mountain k cups .It was said that the regular coffees are fine but they couldn’t guarantee cross contamination.with the flavors. im trying to figure out since I eliminated the suyrup so far so good. I’m hoping. thanks it feels good to listen to other people there views.
×
×
  • 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.