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

Cd Confused With Anorexia...

bored-girl

Recommended Posts

amber-rose Contributor
amber-rose
Posted
Well, actually you have to eat a lot of gluten every day for 3 months before the biopsy, and even that may not be enough to get you positive results on the biopsy. Did they run blood tests? Your positive dietary response should be enough reason to stay gluten-free.

Yes, I did have blood test done. One came back very high, and one came back negative. My gastrologist (sp?) said that I should just eat one slice of bread a day for a week before the bioposy, since i'm very very sensitive to gluten. So i'm going to pig out on gluten during Christmas. He said that should show up well enough for the bioposy. He also said he needed physical proof for me to be considered a true Celiac. I would've been happy with just eating gluten free with out the bioposy and making myself sick. But the doctor insisted. <_< The doctor did say though, that he wasnt sure what else it could be. :rolleyes:.

-amber

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

Celiac.com Sponsor (A8-M):


eKatherine Apprentice
eKatherine
Posted

Your gastroenterologist is wrong. If you even had one positive on the blood test, you have celiac, and you need to be on the diet whether or not you ever have a positive biopsy. Three months on gluten is considered the minimum time it will take to produce atrophy reliably, and even then, it is something that many celiacs never have, regardless of how sick they become or how well they respond to the diet.

It is way behind the times to say that the only true celiac symptom is villi atrophy, and without it you don't have gluten intolerance. You need a new GI.

  • 2 weeks later...
kbtoyssni Contributor
kbtoyssni
Posted
Yes, I did have blood test done. One came back very high, and one came back negative. My gastrologist (sp?) said that I should just eat one slice of bread a day for a week before the bioposy, since i'm very very sensitive to gluten. So i'm going to pig out on gluten during Christmas. He said that should show up well enough for the bioposy. He also said he needed physical proof for me to be considered a true Celiac. I would've been happy with just eating gluten free with out the bioposy and making myself sick. But the doctor insisted. <_< The doctor did say though, that he wasnt sure what else it could be. :rolleyes:.

-amber

By the time your villi are worn away enough to get a positive biopsy, you have already done a lot of damage to your body. If you know you are gluten intolerant, I don't think it's worth it to do that kind of damage to your body just so you can have the official seal-of-approval from your doc. Have you talked to your parents about whether or not it is worth it to get a biopsy? If you are satisfied that you have celiac or at least gluten intolerance, do you need an official diagnosis? Another thing to consider is that there may be complications when you get older and have to find your own health insurance. It's not necessarily a bad thing to not have a diagnosis on your record... But talk to your parents about this.

  • 2 weeks later...
MandyCandy Rookie
MandyCandy
Posted

I know how you feel! I'm 21, 5'3 and weigh anywhere from 96 - 98. And I drop weight very quickly (if i'm sick for even a week and my eating patterns change I can go to the low 90's- 89. I recently started going gluten-free and now i'm worried i'll lose more weight. I Don't want to gain any either but i'm worried people will jump to the conclusion its an eating disorder causing the weight loss not celiacs.

  • 3 weeks later...
Sugar-free/ Gluten free Girl Newbie
Sugar-free/ Gluten free Girl
Posted

Hey Whitney!

I'll be 13 soon and i was just diagnosed with type 1 diabetes and celiac. When i was diagnosed i was only 63 pounds! Now about 2 months later i am about 73 pounds.

Anne Marie

ktscleary@sc.rr.com

sillyyak Enthusiast
sillyyak
Posted

My anorexia was actually a symptom of the sprue and not "true" anorexia. You might want to look into whether or not you have celiac.

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. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      This sounds very similar to the neuropathic pain I experienced with type two diabetes. Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6. These are vitamins frequently found to be low in people with pre-diabetes and diabetes. Remember that blood tests...
    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,582
    • Most Online (within 30 mins)
      7,748
    Kim RS
    Newest Member
    Kim RS
    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

    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.