Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

I Really Don't Know What To Do.

JAS2

By JAS2
in Coping with Celiac Disease

Recommended Posts

JAS2 Rookie
JAS2
Posted

Hey everyone,

4.5 weeks ago I decided to go gluten free to deal with a crazy amount of symptoms with no found medical cause (anxiety, depression, dizziness brain fog, weakness, fatigue, nausea etc). I went through crazy withdrawals, my sister did as well, but she started to feel better about 2 weeks in. I however never really felt better. I did end up with a kidney infection in there so that probably didn't help. After taking to my naturopath and dietitian they both said because I hadn't seen a major improvement in 4.5 weeks I should not worry about consuming gluten. They advised me to eat to stabilize my blood sugar and told me to go back to gluten. Yesterday I ate a chip, a cracker and a pretzel. I also started my new blood sugar diet. Last night I felt more anxious then usual and today I have felt depressed and out of it. I ate a bit of cake and a bite of gluten soup today and tonight my stomach feels a little off. It is very noisy and I am nauseous. I am still on meds for the kidney infection, but I don't think they made me feel like this before. I don't know if I should go back to gluten free or give it a few more days. I am worried because we are leaving for florida next weekend and really don't want to be feeling crappy. What should I do????

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

Celiac.com Sponsor (A8-M):


JNBunnie1 Community Regular
JNBunnie1
Posted

It sounds like you have a pretty long list symptoms that could most certainly be

due to gluten intolerance/Celiac. One month really is not long enough of a test

to see whether or not being gluten free affects you, especially with something

as serious as a kidney infection happening concurrently. It is so easy to replace

gluteny things with gluten-free ones that I just don't see how being gluten free

could affect your blood sugar. Have you been entirely grain-free for this month,

or have you been using replacement products like pasta, bread, bagels?

mushroom Proficient
mushroom
Posted

A three-month gluten free trial period is normally recommended because not everyone starts feeling better right away. Those with mostly GI symptoms often show improvement the fastest; the neurological symptoms seem to take a little longer on average and often don't show up on blood tests.

If you felt better off gluten than on it, I would stay off it. You don't want to be feeling crappy in Florida and if you go back on it now you may well end up feeling worse than you did before. Besides which, you would have to start your gluten free trial alll over again :( if you really wanted to find out if that was your problem. You were just getting started.... :)

JAS2 Rookie
JAS2
Posted
  • Author

i did eat pastas, breads. I made muffins and scones, ate cereal and rice cakes. Almost everyone I spoke with said you should feel better in 2-3 weeks. This is so confusing.

JNBunnie1 Community Regular
JNBunnie1
Posted

i did eat pastas, breads. I made muffins and scones, ate cereal and rice cakes. Almost everyone I spoke with said you should feel better in 2-3 weeks. This is so confusing.

It is confusing, you're right. Fortunately, here on the Celiac forum you've found a huge community of

people who can help you by sharing their personal experiences. A lot of times, that can be more

helpful than what one doctor with limited experience can do for you.

If you've been using the gluten-free replacement products, there is NO reason whatsoever that you

would somehow 'need' gluten-containing foods to add carbs or starches to your diet to control your

blood sugar. I would seriously question whatever doctor told you this. Hopefully someone else will

jump in if I'm off-base with that.

I would strongly urge you to return to the gluten free diet. It's clear from your post that you're feeling

worse since you added gluten back in, and that's pretty good evidence that you need to be gluten free.

JAS2 Rookie
JAS2
Posted
  • Author

Thanks so much for the feedback and support. I was thinking at some point I would go back to gluten to get the official celiac test, but I don't think I want to. I cannot believe how crappy I feel. Last night I said ok I am going to eat a piece of toast and see how I feel tomorrow. Well I woke up this morning with diarrhea so back to gluten free I go. Just wish I knew if it was celiac or a sensitivity. Is there any testing that I can do without going back to eating gluten?

cavernio Enthusiast
cavernio
Posted

I'm dx celiac, going on 7 months, still not really better. Getting there though. Your naturopath and dietitian, while trying to make things easier for you, obviously aren't aware of how long it can take some people to feel better while being gluten free.

Were you 100% gluten those 5 weeks? Didn't eay any traces of things, or used dishes that probably have gluten on them, or ate out or at someone else's house?

No, there's not really testing you can get without going back on gluten. It's not useful to define difference b/w gluten sensitivity and celiac disease, except for what other people will treat you as (which, albeit, can be a really big difference). I read evidence everday that gluten sensitivity sounds like pretty much the same autoimmune disorder, just doesn't affect the small intestine.

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,037
    • Most Online (within 30 mins)
      7,748
    Celiac mimi
    Newest Member
    Celiac mimi
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • rjane
      Gluten Sensitivity

      By rjane · Posted

      thank you kind sir for replying to my post , it seems like a mine field at the moment, I gave him hard boiled eggs yesterday maybe that caused him to have a flair up today, I am feeling a bit overwhelmed at the moment, trying to keep him feeling better ,
    • trents
      Gluten Sensitivity

      By trents · Posted

      Welcome to the forum, @rjane! Making gluten free bread from scratch that both tastes good and holds together is a real challenge. There are some pretty good commercially made choices in the stores these days. Once the big food companies figured out there were enough of us out there for them to generate a profit, they went to work developing some good recipes that are hard to emulate at home. However, the commercially made breads are expensive! One thing to to realize is that gluten free flours often contain ingredients that are hard to digest (polysaccharides) and can cause gas, bloating and the runs. Things like xanthan gum and gar gum that are used as texturing agents. The other thing to understand is that your hubby may have developed intolerance to foods in addition to those that contain gluten. This is common among celiacs and especially in the early stages of recovery. The most common offenders are dairy, oats (even gluten free oats), soy, corn and eggs with dairy and oats being the most prevalent offenders. So, you might experiment with eliminating some of these things. As healing of the villous lining of the small bowel progresses, secondary food intolerances can disappear but full healing can take two years or longer for older adults. You might find this helpful: https://www.celiac.com/forums/forum/27-gluten-free-recipes-cooking-tips/ and this: https://www.celiac.com/forums/forum/51-food-intolerance-leaky-gut/
    • rjane
      Gluten Sensitivity

      By rjane · Posted

      my husband who is 67 has just been diagnosed with CELIAC'S and I am finding it very difficult to make meals for him, I have a new bread maker and finding it hard to make something edible from it, I am 81 and find now I have to eat the same as him ,as making meals is hard work and making 2 different meals even harder, he has been on the gluten free food for over a month and today he had a bad bout of the runs I am wondering if its my fault, I thought I was being so careful , I am finding it like a minefield trying to sort out what to give him when he has a bad day , any idea's would be welcome thank you  
    • knitty kitty
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By knitty kitty · Posted

      Welcome to the forum, @mytype1diabetes, Your statement that your daughter has become itchy and has hair loss made me think of iron deficiency.  Those were the same symptoms i had when I was iron deficient.  Was she tested for iron deficiency anemia at the time of her diabetes diagnosis?   Seems in the early stages of iron deficiency anemia, blood glucose levels can be falsely elevated.  Treating Vitamin D deficiency can also help immensely.  Vitamin D deficiency, iron deficiency, and deficiencies in the eight B vitamins, especially thiamine, can occur in Celiac disease.  Changes in stool can be caused by iron or thiamine deficiency. I was diagnosed with type two diabetes and had the same deficiencies.  I would not feel comfortable waiting three to six months for a recheck.  I would get the iron deficiency checked right away.   Hope this helps!  Sending prayers! References: The Effect of Iron Deficiency Anemia on Hemoglobin Glycation in Diabetics and Non-diabetics https://pmc.ncbi.nlm.nih.gov/articles/PMC11513211/#:~:text=noted increased HbA1c in IDA individuals%2C which,IDA before adjusting diabetes treatment [ 11]. Effects of iron deficiency anemia on hemoglobin A1c in type 1 diabetes mellitus https://pubmed.ncbi.nlm.nih.gov/10453183/ Impact of vitamin D deficiency on iron status in children with type I diabetes https://www.nature.com/articles/s41598-024-61559-5#:~:text=Iron-deficiency anemia is the,both clinical conditions that coexist. Thiamine Level in Type I and Type II Diabetes Mellitus Patients: A Comparative Study Focusing on Hematological and Biochemical Evaluations https://pmc.ncbi.nlm.nih.gov/articles/PMC7282352/
    • Wends
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By Wends · Posted

       So sorry and sending well wishes. Replying from the UK. The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed. The TTG test is suggestive of coeliac disease BUT it can be transiently raised in type 1 diabetes, milk protein intolerance (common in early childhood. Can also cause malabsorption similar to coeliac disease). Can be slightly raised in other food sensitivity and food allergy and some other conditions. Whilst it is more specific for coeliac disease than the older anti-gliadin test the EMA test gives a high specificity for coeliac, but labour intensive test so is checked when the TTG shows positive as a further confirmation of a likelihood of Coeliac. Sometimes in children the anti-DGP (deaminated gliadin peptide) igA and IgG are performed as more likely positive in childhood coeliac disease. Unfortunately less used test these days in favour of ttg test. Though in research studies still utilised in addition to ttg and EMA. It usually follows that the EMA test will be positive in active coeliac disease later than the TTG shows positive. It may be classic transient antibodies with type 1. Likely what the Dr is counting on to not worry you or put your child through unnecessary testing. it also takes time as in weeks/months for antibodies to build up. The new guidelines by Gastroenterology Society say in children coeliac can be diagnosed without biopsy if the ttg is ten times the upper value. Plus positive EMA. EMA is usually positive after ttg. It’s a good sign it’s negative and the Doctor is doing the right thing to retest in three to six months. It’s the only way for a definite diagnosis and whether further testing is needed (endoscopy and biopsy). The Doctor is taking the wait and see approach as it is common in type 1s for the TTG antibodies to normalise too, and will be following standard practice. Return to your Dr sooner though, if there are signs of malabsorption and sudden deterioration. It wouldn’t be unreasonable to request another blood test sooner with symptoms of coeliac. It’s a tough one. Have you a family history? Re type 1, Dr Bernstein book invaluable, and type 1 grit online. If you’ve not heard of this elderly type 1 Dr (diagnosed as a child) and his story already you need to. Sadly he recently passed in his 90s still practicing and treating type 1s and 2s. Wealth of info on his diabetes university you tube channel. Was the first to start testing blood glucose numbers at home, he was an engineer and retrained as a Dr. He gave the information to the world and diabetics that its possible to have normal blood glucose numbers and prevent the complications. The law of small numbers. Hope this reply is helpful.  
×
×
  • Create New...